Friday, April 5, 2002--The Hummer Ride

Dear Friends,

Notice the new pics???  We've been ordained into the world of digital technology!  We have had a blast taking pictures!  Hopefully now we can update pics more frequently.  Now everyone can "watch" the progression of Steven's staph infection on his face hopefully get better and better.

Speaking of his infection, the doctor's office called yesterday and brought another "reality check" to us by saying they wanted to see him today (we weren't supposed to go back until Monday to start the next round of Chemo.)  So the newest report is that, yet still, Steven's face is not cleared enough to start the chemo on Monday.  This changes the date of the transplant to around May 22nd.   Steven will now be one month with no chemo and, yes the fear of the cancer coming out of remission to rear its ugly head, has entered our thoughts.  Dr. Estrada, however, believes his remission is very strong and  we don't have a choice but to wait until it is totally clear before we proceed with this next intensive round.  Oh well, being frustrated and worried doesn't help a thing so instead I'm going to tell you about our wonderful week.

Everytime we go to the hospital or Oncology office we pass by a HUMMER dealership.  Steven has grown to LOVE looking at those "truck cars!"   On Tuesday we actually we're able to take him for a ride in a "cool" white HUMMER (did you know that a HUMMER costs over $125,000???--that's one thing Steven WON'T be getting on his 16th birthday!)  On the way there Steven seemed almost nervous but as we pulled in he said with a huge grin on his face "Mommy...I soooo excited!"  It brought tears to both Dave and my eyes.  It was such a neat experience for all of us.  That is all Steven talked about for the next two days!   A big thank you to Sue Wysong and Tony at the dealership for arranging such a special treat!  Now, whenever Steven is upset and nervous to go to the doctor's--all I have to say is "We get to pass by the HUMMER you rode in!" and that seems to make the ride go a little easier (remember--every little blessing helps!!)

We also had an incredibly special Easter since we were, for the first time in over five weeks, able to go to church as a family.  Our church has been so supportive.  When I called to tell them that we had a "pass" to go on Easter even though his counts weren't as high as we would have liked, the Special Needs Ministry came to the rescue and had a special room ready for Steven with all freshly cleaned toys and two people to take care of Steven so we could attend Easter service (they even saved us a seat in the sanctuary!) Thank you Vicki, Samantha (great teen helper!), Mary Sue, Becky, Jackie, Shari and everyone at University United Methodist!  UUMC  even planned a special visit from the Easter Bunny where she came and hid Easter eggs in our backyard!  Meredith, Emma and Steven loved it!  Thanks!

Steven's counts have now come up with a little help from Neupogin, to over 25,000 and he is off all the IV meds but back on PO antibiotics to help the healing along.  It has been so nice to have several days to do some fun things.   We went back back to Steven's all time favorite place-- Chuck E Cheeses with Karin and Travis--they had a blast and I didn't even have to follow him around with Purell hand antiseptic!  Daddy took him on a special train ride and we went to play at a sandbox restaurant called Willies!  These are all things that in the past I would have taken for granted but now realize how lucky we are to have days where his counts are high enough that we can go do some fun things.

Next week?  For Dave and I--more worrying about Steven's face.  We hate that he's missed some Chemo, however, we understand the importance of waiting for him to be infection free before they proceed.  On the upside, we will have seven more days of doing things as a family before he starts the next two chemo medicine combination where he will be hooked up to an IV bag for 8 days.  So for now, it's time to put the worrying on hold and enjoy the gift of another "free" week.   As always, thanks for your prayers that over the next seven days his face fully heals so we can continue our "climb" over this huge mountain!

Saturday, April 13th, 2002--A big week of chemo

Dear Friends,

Steven went back to the doctor's yesterday for the first time in a week.  Sometimes it's easier when we go everyday because Steven gets used to it and doesn't fight going.  Since he had a week "off" he was starting to feel so normal that it made it that much harder for him to go yesterday.  One day when Steven and I were riding in the car he touched his port in his chest and asked me "Mommy, am I still sick?"  What a tough question that was to answer.  I told him "Dr. Estrada and Dr. Grayson say you are getting better but we still need to keep giving you medicine." Boy is it hard to bring it down to a level he can comprehend.   All he know's is that right now he's feeling good and he is getting to do soooo many special things that he normally wouldn't be able to do.

Speaking of special things--he did two very neat things this week that our great friends Lisa and Phil Rosenfeld planned for him--thank you so much!   Lisa's friend is the Fire Captain at one of our local fire departments.  Steven was not only able to go visit the station, they made it quite a special day.  They raised the huge ladder truck and one of the firemen climbed to the top and even let Steven and I climb on the back of the firetruck!  Then they asked if Steven would like to go for a ride!!!  (That is a huge deal since in 28 years they had never let a child ride in the cab of a firetruck but they received special permission from the San Antonio Fire Chief himself!)  It was incredible!  Steven couldn't stop talking about it!   Thanks for such a great day! 

The other very special thing he did was go to a construction site that Phil's company was doing some work on where he got to work the "big rigs"!   For those of you who know Steven, you know his love for all kinds of trucks!   With Tommy the job foreman, Steven was able to work the joy sticks of an excavator truck and actually dig a hole--WOW!  Yes, I was a little nervous but daddy and Steven thought it was way cool!  He also got to drive a big Steam Roller truck!   Steven loved Tommy, the dirt, the trucks, and all the workers!  We had to drag him out of there!  Steven asked "When I get out of the hospital can I come back and drive some more trucks?"  This will be a good "carrot" to dangle and motivate him to get strong after his BMT so he can go drive the big rigs!  Thanks Phil and Tommy!

Through all these neat things, Dave and I have both felt such a mix of emotions.  With this unexpected three week delay in chemo waiting for his face to heal we have felt the closest thing to a normal family (don't all "normal" families drive the big rigs and ride in firetrucks?  Ha Ha) Seriously though, we've had three weeks of living our "new normal" and yet in the back of our mind we know we have this huge mountain towering over us which just creates anxiety and makes us feel anything but normal.  We want to proceed but in the same sense--proceeding brings on a new set of concerns. 

So it is with very mixed emotions that we start the next round of Chemo before the Bone Marrow Transplant (BMT).  After examining Steven yesterday, Dr. Estrada did not feel like Steven's face was quite to the healing point he wanted it to be, however, he felt like we've delayed enough and we have to move forward.  So Steven will be starting two new chemo drugs on Monday.  We pray that his staff infection doesn't regress and he tolerates the new chemo drugs well.  We will be at the oncology clinic 8 hours on Monday and about 6 hours each day Tuesday through Friday.   Steven will be on a continuous IV fluid drip for eight straight days since these drugs are toxic to his kidney's.  They need to make sure his kidney's are continuously flushed. This means a dramatic shift in our routine but it is a huge step closer to  transplant. 

Due to his recent staff infection delay, his new date for the transplant is right around June 1. His counts will start to go down at the end of next week and will stay down for about two weeks.  So for the next three weeks we are tied to the house.  That's why all these special things he's been able to do have helped so much because we can look at the pictures and "re live" all those wonderful moments! After his counts recover, he needs two weeks of getting as strong as possible before he's admitted to the hospital.  That means getting him a lot of exercise, eating right (is their such thing in a three year old?), and just "pumping" him up for the big day. 

I'll be honest, this delay has been  hard because Dave and I had "psyched" ourselves up and had "planned" the next two months and then --it changed.  Once again this is a huge lesson in not planning beyond tomorrow because it most likely will change.  A friend whose son had gone through a BMT  told us when we were diagnosed that we would get so sick of thinking the phrase "just take it one day at a time" and at the time I couldn't appreciate why--now I do.  I KNOW I need to take it one day at a time and appreciate each day.  But on those days when I'm sleep deprived (which is often) or just kind of crabby (aren't we all allowed to have those days?) Sometimes I just want to snap my fingers and make it all go away or just fast forward to six months from now when Steven's well and where anxiety (Steven's and ours) isn't such a dominant feeling.  

Through all this I do still feel God's presence.  I have found a certain sense of calmness listening to music.  I've had several friends send or give me some great christain contemporary music CD's.  The kids love the beat and I don't have to worry about the words (I've been burned by a few Britney Spears songs--trying to explain the meaning of certain things to Meredith and Emma!!)  Three great CD's are Mercy Me's Almost There, Steven Curtis Chapman's Declaration-- we are taking the girls to see him in concert this Wednesday (at least I won't have Meredith wanting to dress like him --after seeing Britney on TV she wanted to wear those bare tummied shirts that Britney wears!) and a guy named Mark Shultz (I don't know the name of the CD).  All of them are great to work out to, and have songs that help brighten my day and  continuously reassure me that putting it in God's hands is the best thing.   HE IS giving us the strength we need to make it through each day.  Thanks for your prayers --sometimes when I'm too tired to pray at night--I'm counting on your prayers to keep the message flowing!!

God Bless!

Lisa, Dave, Meredith, Emma, and Steven

P.S..--Check out the new pics at the bottom of the Picture Album page!

Monday, April 15

Quick update--Steven's such a trooper!  Today he started two new chemo drugs.  One drug in particular causes a lot of nausea and vomiting.   They gave him some meds to try and stop it but he's definitely had a lot of breakthrough throwing up.  Kids are so resilient though.  He has made it to the bathroom almost every time and bounces back pretty fast.  Getting his "crab" put in today was tough for him--he was shaking and trying to "negotiate" his way out of doing it by saying--  "I'm too busy right now--we can do it later" and "Wait just three more minutes!."  But once he was finally poked, he adjusted quite well.  We spent most of the day at our oncologist's office.  A friend came to visit and help pass the time. The nurse said usually the first couple of days the vomiting is worse so hopefully by tomorrow night he will be back on the upswing!  Day one done--only four more to go!

Tuesday, April 16

Day Two--Never a dull moment that's for sure.  Last night went pretty well with the exception of Steven waking up at 3am extremely agitated and sweaty.  We figured out it was because he probably felt like he was going to throw up so we gave him more Zofran (he hated that too).  Then he was so mad at me over everything that he said "Mommy you get out!" of my own bed of course so I slept on the couch the rest of the night!

Today was Dave's turn at the doctor's office (I had to plan for Emma's birthday party that we're having a month early since we may be in the hospital on her "real" birthdate).  Lucklily, Dave and Steven had the rest of the night "bonding" in bed together so Steven was very cheerful going back to the doctor with Dave for day two of chemo.  UNTIL--leaving the doctor's for a two hour break,   he threw up in Dave's car (third time that has happened--what do you want to bet Dave will want to take Steven in my car from now on!) Upon coming home Dave decided to take a nap since the day has worn him out. Almost minutes after laying down, Steven came into the room and attempted to climb up in the bed--as he did this he accidently stood on the cording to his IV pump and ripped the port needle out of his chest--Major OUCH!!!.  To say the least, it was a stressful couple of minutes because I had to tear off all the dressing which is practically glued on. Surprisingly Steven said "thank you" after I pulled the needle the rest of the way out (very polite but not the response I would have expected!)--then we had to rush him back to the oncology office where he had to have his port needle reinserted and more fluids started.  Since Steven has been throwing up they are now sending him home on IV fluids all night as well.   Dave's tired, Steven's tired, I'm tired and Meredith has soccer pictures tonight (our one spring event we let Meredith do to try and maintain some "normalcy" for her).  This is when we are so grateful for all the wonderful meals people are bringing us--THANK YOU!   Day three--I'm on so Dave can take a break--I hope it's a less eventful day!

Thursday, April 18

Day 3 and 4--What a crazy and exhausting last two days.   Steven had to be admitted to the hospital because he woke up yesterday morning screaming as he tried to go potty.  After awhile he could go but just little streams and shaking as he did it.  It was determined that he had blood in his bladder which the chemo had caused.  We went to the hospital where they had to catheterize him--what an incredibly traumatic procedure for Steven and a heartwrenching one for me to watch.  In the big scheme of things being catheterized isn't that big of a deal, however, when it takes four people to hold him down because he's so scared and flailing around--I just kept wondering why they couldn't make it a little less traumatic ( a little morphine would do the trick!)  Oh well, after about 30 minutes it was over and we were cuddling in his hospital bed together.  They started him on several meds and increased his Zofran--since he hasn't eaten a thing in two days, he promptly threw up!   Then at 3am his catheter dislodged from the bag and due to the heavy bladder fluids/meds he was on--it soaked the floor, Steven and his whole bed in a matter of about a minute!  And to cap it off--the poor little guy threw up again about an hour after we had him and the bed all made up!  I don't think we've ever changed the sheets four times in one night!  I do find, as hard as it is being in the hospital, Steven and I get some really good cuddle time.  At one point, in the dark, he was so anxious and restless.  I was sitting on a chair next to him since he was crossways on the bed.  He opened his eyes, looked at me and said "Hey mommy, I got an idea--how bout' you come cuddle next to me and we go sleep together?"  It made me cry!  He has such a tender heart (and lucky for me the bed was still dry!)   We made it through the night and were released back to Dr. Graysons's office.   No urinary tract infection,  just chemo induced irritation so now that they've cleared the blood he will be hydrated 24 hours a day to best help his body eliminate the chemo.  This is great compared to the alternative of staying in the hospital.   Steven's so good walking around with his backpack. Going to the doctor's office, to the hospital, back to the doctor's office has definitely taken a toll on his normally cheery self but it just means that coming home to sleep in his own bed tonight will be that much better.  A friend sent a card that talked about all the "angels" god has sent to help and show HIS presence in our family's life--and there are way too many to name them all but once again its week's like this that I want to make sure everyone knows how thankful we are for all the friends who have come to the hospital to sit with Steven so Dave and I can take a break, come to the house to play with him, and all the wonderful meals, cards, emails, calls etc..-THANK YOU-THANK YOU!!!--Well, I'm off for a much needed nap because now it's Daddy's turn again!

Friday, April 19

The end (for now!)--What a difference a day makes!  Today was pleasantly uneventful.  He spent almost all day at the oncology office getting chemo.  Upon arriving to Dr. Grayson's office Steven ran down to the bathroom to go potty.  As he finished he loudly announced to everyone "MY PEE-PEE'S DON'T HURT ANYMORE"--it was so cute, he had the biggest smile on his face and did a little "jig" as he pulled his underwear up! He was so excited that he could go to the bathroom without pain!  And considering he is going about every 30 minutes--well, I'm very happy that the bladder irritation ordeal is behind us!  His energy level was so high that I even kiddingly accused the doctor of adding a little "stimulant" to the chemo bag!  This was Steven's last round of chemo before being admitted for the transplant (where they will do heavy dose chemo for nine days prior to the actual transplant day.)  Over the next three weeks his counts will drop to around zero (no leaving the house for about a week)  and he will possibly have another blood/platelet transfusion.  By the second week of May his counts will have recovered and we will have at least two weeks at home with him feeling great (hopefully!) so we can have some fun before being admitted for the long 4-6week BMT stay.  Now were just back to praying for him to stay infection free as his counts drop and that his staff infection on his face doesn't "re-infect" (is that a word?)  I think I'm still tired from the last two days!  Time to regroup and have fun at Emma's big birthday party tomorrow!

Sunday, April 21--"The Wall"

Dear Friends,

I think Dave and I have finally hit what my mom has called "the wall".  These last five days have been unusually difficult for Dave and me, not because Steven had to be hospitalized because when that happens the adreneline kicks in and we're so focused on what needs to be done to help Steven that there isn't time to worry or focus on our own needs.  I debated whether I was going to put this in an update but after talking to several people, I need to be honest with our feelings so people don't get the wrong impression that Dave and I are handling everything so wonderfully all the time.  I've had so many people say how strong we've been and we do feel strong most of the time, however, this has been a week that has definitely tested not only our strength but our faith as well.  When Steven was in the hospital last Wed and Thursday we found out that one of our own doctor's patient's--a little 2 1/2 year old girl named Anna--died after her Bone Marrow Transplant.  She had been in the hospital 60 days post BMT and died of acute graft vs. host disease (basically her body rejected the new immune system.)  This hit Dave and I really really hard. 

I happened to see our transplant doctor at the hospital when she came to say hi and check on Steven.  She seemed and acted so "normal" --even cheery--which I know she had to act that way-- especially with a family about to come in for a Bone Marrow Transplant.  What we found so hard was that life goes on --and so quickly--things have to get back to normal.  That same day someone made the comment regarding BMT's that "usually it's the cute, precocious ones that seem to have trouble".  That was also hard to hear.

Dave, who has always been amazingly positive, said he felt like maybe these are "signs" that God is trying to prepare us for the worst.  We have been so positive and so strong for so long and when the reality of death hits this close to home--boy is it hard.  We feel like we are reaching for something to keep our faith strong and keep that positive attitude.We've spent probably too much time struggling with the hard questions.  And there are no easy answers.  It's all about faith and attitude. 

I find I'm looking outward for that one friend to say the exact "right" thing to make it all better--and I know deep down that there isn't any one "right" thing that will make all the pain and worry go away.   (okay--friends--don't stress out trying to come up with what to say to me--an understanding ear is perfect!)  I've been told that I'm "stoic" and present everyone with a "everythings going great" attitude all the time when maybe it's not going as great as I say.   I know I need to be more honest during the harder days. 

Today Steven started the morning by throwing up but then by the afternoon he was swimming, laughing, playing with Shelby (one of his sweet babysitter's who came to see him), and acting so incredibly normal that it's days like these where just thinking about putting him back in the hospital for the BMT just tears us up.

It's strange how on some of the days when Steven is doing great--that's when Dave and I allow our minds to wander and worry. A friend sent me a card that said--"Worrying does not empty tomorrow of it's troubles--it empties today of its strength".  Boy how true that is. 

Well, I don't really know what the point of this update is except to share our very real feelings about what's coming up. The pressure is building and now we're just in a waiting game until the "big" transplant day.   However, Dave and I will get over this hump and we will make the most of the next five weeks and our positive attitudes are definitely still there--just a little subdued tonight.

Thanks for being there for us!

Lisa, Dave, Meredith, Emma and Steven

Thursday, April 25th--Steven's Make-A-Wish

Dear Friends,

 This is a MUCH better week. Dave and I have "re-focused" our energies back on the task of healing Steven. It took lots of talking to each other, prayer, calls and emails from friends, music, and believe it or not—going to the San Antonio Fiesta River Parade to get back our positive attitudes. We’ve found that in a household of three young kids--it’s very hard to stay "down" for too long. Steven’s counts were so good on Monday that we took our whole family and some friends down to the river parade. It felt SO good to go. Steven and the girls loved watching all the decorated boats. We were just a normal family going out for some fun! For Dave and me it was kind of a turning point. We’ve discussed how we need to refocus and just live for and enjoy the next "five minutes" and deal with each crisis as it comes—not take on the weight of the world with worrying about all that could happen in the next six months. We’re tired of letting our worries rob us of appreciating those "golden" moments with Steven and the girls.

And speaking of the girls—our old babysitter Leslie gave the girls such a nice compliment. Last night she watched all three (YEA!) so Dave and I could go out to a movie (our first "date" in three months-it felt great!). When we came back she commented that both Meredith and Emma had been exceptionally caring and sweet to Steven. Reflecting back, I have noticed that both Meredith and Emma have taken on quite the "mother hen" role with Steven. They play so nicely with him and yet continue to be patient with him when he has his "crabby" times. When I think of what impact this whole situation will have them when they are older—I pray that the amazing compassion, forgiveness, and caring that they have displayed over the last three months will continue to grow and be a cornerstone in their "character."

They do, however, sometimes use Steven’s Leukemia to "work" a deal to their advantage. For example, Meredith came up to us this week and said "If I do good in donating my bone marrow—can I get my ears pierced?" Which Emma then piped in "If Meredith gets to do it, and since I’m the Helper Champion don’t I get to?" WOW—they sure know how to pick their timing! After much discussion (it took awhile to convince Dave that just because they want to get their ears pierced doesn’t mean that they will be asking for a tattoo next!) We decided that this would be quite the "big deal" to them and somewhat of a minor sacrifice for us. When we told them they could their expression was priceless! Although when Emma heard (from me of course) that a needle has to go through both ears—I have a feeling she may not go through with it (I hope not—she’s only six!!!!) But if it makes them feel special about this whole thing then that’s what counts.

About three weeks ago Dr. Grayson’s office told me that we needed to have Steven make a wish through the Make-A-Wish foundation. That was a very emotional moment because I always thought that the Make-A-Wish foundation was for terminally ill children only. We learned, however, that any child with a life threatening disease is eligible for Make-A-Wish. They put a rush on it since Steven will have two weeks in May with hopefully good blood counts and no neutropenia where he should be strong enough to do something special. The Make-a-Wish people came to our house bearing gifts for all our kids and formally granted Steven’s wish to go to DISNEY WORLD!!! It is going to be such a special time for us. It’s coming up fast--we are scheduled to go the week of May 14-20. The girls have decided that even though we’ve had to make a lot of changes in our life due to Steven—this is a REALLY good thing to have happen! His doctor doesn’t release him to go until the day before so we’ve had to temper our excitement with the girls a little just in case he gets an infection or ends up in the hospital thus preventing us from going. But barring any problems, I’m sure we’re going to have a great time. We’ve never been to Disney World with the kids. We are staying at the Make-A-Wish hotel (can you believe they have their own hotel?) called "Give Kids the World". You can check out the hotel on their website at www.GKTW.com   I hear the place is great!

As far as this week goes, Steven is going back to the doctor tomorrow for blood work and a possible blood transfusion. His counts are going down (as we expected) so he is starting to feel more tired late in the day and is a little pale. Since he will be neutropenic by this weekend we are house bound for the next 8-10 days until his counts recover and he can be around groups of people again.

All in all he's been a happy little boy this week. Yesterday, after taking him out for an ice cream cone he exclaimed "Mommy—this is a great day!" And it truly was!

God Bless,

Lisa, Dave, Emma, Meredith and Steven (diagnosed 1/29/02 PH-ALL+)

Tuesday, April 30th--Anything but "typical"

Dear Friends,

The roller coaster continues.  Today we brought Steven in for his weekly blood count check.  Steven's oncologists' had expected Steven's counts to drop pretty significantly, however, Steven has once again had what they term as an "atypical" response to his latest chemo treatment.  His ANC was at 800 (less than 500 is considered neutropenic--meaning not able to fight off infection.) Today they expected his ANC to be at least less than 500 or even down to 100.  His actually increased back up to 1200.  Go figure.  His hemoglobin (red blood cell) was at 9.2 on Friday and today it was up to 10.4.  So needless to say he did not need a blood transfusion.  After seeing the results our oncologist seemed rather "concerned."  I, after seeing the look on their faces, was extremely nervous.  His explanation was that Steven is either doing great, is very strong, and bounces back quickly OR the chemotherapy treatment over that week did not work effectively and he could be coming out of remission--this would not be a good thing. 

After much discussion about Steven's past response to his chemo, we decided that his response to all but one course of chemo has been considered atypical.   Dr. Estrada said that the chromosomes he has (PH-ALL and the Mono 7 Cell)   mess with his body's ability to respond in the "normal" way to chemo.   On the positive side, his atypical response has kept him from getting too neutropenic. Also, the fact that his WBC count rebounded quickly has helped the staff infection on his face not get worse.  On the flip side, there is a chance that the cancer cells could be growing again. Dr. Estrada and Dave both talked to Dr. Wall (transplant doctor) who obviously see's a lot of difficult to treat Leukemia's.   She was very positive stating that his blood count numbers have "the good guys" going up and his ANC quickly rebounding.  She believes that he has some really good marrow right now. We felt better--sort of. It's always easier having concrete answers, however, this uncertainty makes us rely on faith.   He will have the transplant the beginning of June regardless, however, the success rate is better if he's in a strong remission going into transplant. The transplant process has begun.  Steven and Meredith go in for their pre-trasnplant/donor "work up" next Tuesday.

What does all this mean?  We choose to believe that Steven does not need to follow the "typical" results to have a successful outcome. In the scientific definition he has an extremely rare form of Leukemia with two rare chromosomes attached to the cancer cells.  This makes comparing his results to any group other than his specific type not an apples to apples comparison. And in a "real" definition, we believe Steven is anything but typical. Dr. Wall herself said that the conclusion that should be drawn from Steven's results, regardless of any uncertainty, should be that he is a very strong boy who bounces back quickly.  She also said that it helps that "he seems to have SO many cheerleaders out there pulling for him!" 

Today in the waiting room Steven was running around playing and making friends with several people waiting. A woman I've never met out of the blue said to me "Your son looks so strong--I can tell he's a fighter."  Hopefully meaning--he's going to beat this thing!  After getting his blood count results and hearing the scary possible reason for them, I could easily have sunk back into the "worry pit."  While waiting for Dr. Estrada to look at his blood smear to see if any Leukemia blasts were visible (thank you God--none were), that woman's comment about Steven came to mind and it had a very calming effect.  I believe God was working through her to help me at a moment when I needed it.  The reality is--Steven IS a fighter and it truly doesn't matter that his response hasn't been "typical." He is not a statistic.  Through it all Steven has shown us so much strength, humor, ability to laugh, braveness, tenderness and love.  In our opinion-- that's what's going to get him through his bone marrow transplant.  At least that's what we're going to focus on.  Everytime we leave their office we say to Steven--"Dr. Estrada and Dr. Grayson say you are getting better!!"  At that moment Steven seems to stand a little taller and smile a little bigger.  He sure believes he's going to get better --and so do we.

So a big thank you to all of Steven's "Cheerleaders"!   Keep on cheering because God IS listening.

God Bless,

Lisa, Dave, Emma, Meredith and Steven (diagnosed 1/29/02 PH-ALL+, MONO 7 CELL)

Saturday, May 4th

Well, it's finally happened.  Not a big deal in the grand scheme of things but nevertheless, a daily reminder of Steven's illness--he has now lost most of his hair.  In just one day it's almost all gone.  Everytime he hugged me it was like rubbing up against a dog.  All day long Steven was picking hair out of his mouth and eyes!  It's amazing how over the last three month's he hasn't lost hardly any and then in one day he loses most of it!  Before today it looked like he just had a bad buzz cut--now it's very apparent that it's more than that.  This picture was taken yesterday afternoon and by this morning he's lost much more! 

He's still a cutie and surprisingly his "peach fuzz" underneath is blond. Luckily he and his sisters' don't seem bothered by this relatively sudden change. His only complaint is that he doesn't like putting sunscreen on top of his head--time for baseball caps!

This afternoon  I took Meredith and Emma to a wonderful Mother/Daughter Tea at our church (thank you Becky!) Steven is so used to being with me that he was upset when I told him he couldn't go to the tea.  Upon leaving he looked at me and with the cutest smile said "Mommy--when I get better can I be a daughter?" 

Tuesday, May 7th--The Pre-Transplant work up

Hello friends,

The official day is now on the calendar.  Steven will be admitted to the hospital on Sunday, June 2nd (which also happens to be Dave's birthday!) and barring any complications, the transplant will take place on June 11.  Having a specific date helps.   I think this period of waiting  had really started taking it's toll on Dave and me.   I know our whole family is ready to move on to the next step so we can continue our climb over this mountain.

Today's pre transplant work ups went very well. Steven and his "Helper Champion" Emma went in at 9am..  We took Emma out of school in the morning so she could "help" Steven be brave during his tests!  We could tell she felt special doing her part and being involved.  Steven was at the oncology clinic and hospital pretty much all day.  At 11:30 I took Emma back to school and then picked up Meredith and took her to the hospital for her round of tests.  Her biggest concern was getting "poked" for all the blood work they had to do.  Well, we are happy to report that she was sooo brave and with the help of "magic cream" she didn't feel a thing.  Steven was there to cheer her on.   I was surprised though that he would not watch Meredith get stuck--he hid behind the door, peeked through the crack, and chanted "Be brave-you can do it!"  They had a patient advocate come in to talk to Meredith to make sure she understands everything that will happen to her. She is so ready to donate her marrow.  She understands that there will be a little "pain" and is still very proud to be able to help her brother.   She is handling it with such grace and poise-boy sometimes she seems older than just eight!  I will have to say though that she was working us to make sure we kept attention on her by saying things like "Daddy, I can't go to soccer practice tonight because I might have to move my arm and it is soooo sore!"  Under the circumstances she and Emma sure deserve a little extra lovin! 

Steven handled everything wonderfully--as long as they did it HIS way.  He's really into control right now.  He loves to negotiate everything ie:  "you can take my blood pressure if you do it on my arm- not my leg!" and "I'll be ready in three minutes" (as you can guess "three minutes" never comes!)  Luckily, the transplant staff is so good with these kids.  They made Steven  feel like he was helping in everything they had to do to him. Several people commented what "spunk" Steven has!  Overall all our kids were quite the troopers during this tense but productive day.

Steven's counts actually dropped down to 700, however, he's producing a lot of the good cells so Dr. Grayson said he is recovering nicely.   Recovering-- just in time to hit him with two more oral chemo drugs prior to transplant.  He's now on oral Methotrexate (5 pills a day one day a week) and 6MP (once per day for 21 days).   Plus they started him on Prednisone for seven days.  On Monday Steven goes in for a last bone marrow aspiration, spinal tap, and possibly some intrathecal methotrexate. These tests will show how strong his remission still is and give the transplant team a baseline to work from.  And then hopefully we will be off to Disney World for our Make-A-Wish trip!  Pray for a healthy week for us all so we can go!

Monday May 13, 2002

Dear Friends,

We're off to Disney World tomorrow!  YEA!!!  Steven's visit went well today.  His counts look great so he got the "thumbs up" to go see Mickey Mouse!   This morning Steven had a bone marrow aspiration and intrathecal (spinal chemo) methotrexate.  The preliminary results of the bone marrow aspiration looked very good but we will know conclusive results next Tuesday.  They had to give him a little more anesthesia than usual during the Bone Marrow procedure so afterwards he spent a few hours throwing up, shaking and just feeling dizzy. Luckily, by midafternoon he was back to his old self.  We hope he's over the throwing up since we're getting on a plane tomorrow at 6am!  All the kids are so excited!   We're not going to think about his upcoming BMT--we're focusing on fun!!!  We are going to just feel normal, re-connect and play!  Thank you to  Dr. Grayson and Dr. Estrada's office for helping set up this wonderful vacation with Make-A-Wish! And a big thank you to the Make-A-Wish foundation for making this amazing family adventure happen so quickly!  THANK YOU!

Wednesday, May 22--Our Make-A-Wish Trip to Disney!

Dear Friends,

If we could capture what Steven's face looked like during almost every minute of his Make-A-Wish trip to Disney World--this picture would be it!  He had a "glow" about him that was truly contagious.  Why is it that kids spend their time looking for ways to have fun while us adults spend way too much time worrying?   Both Dave and I learned a lot from Steven during this trip.  He, along with Meredith and Emma, truly embraced and relished in all the wonders that the "Disney Kingdom" has to offer.  What a getaway this was for our whole family.  In this picture he's with his new friend Pam Landwirth -- President of Give Kids the World Village.  We stayed there with approximately 80 other Make-A-Wish kids.

Meredith, Emma and Steven liked it so much that in the morning as I was getting him ready to go to the real Disney World for the first time Steven said "But Mom-THIS IS Disney World!"  It truly was a young child's wonderland complete with an all day long free ice cream parlor, a train that carried you anywhere in the village, many movie character visits, a water park, a great pool, a movie theatre, a fishing pier and ship, a Disney made Carousel, a CASTLE!, and Steven's favorite--A huge toy train interactive exhibit!  We spent three hours playing just with the toy trains!

The village was amazing and Pam, along with her incredible group of employees and scores of volunteers ensure each child has their "wish of a lifetime!" Steven was particularly fond of Pam since she was the one on the "video" about the village that played on a certain channel in our villa.   He watched that video about GKTW easily five times a day and that is the one he wanted to watch before bed. When he saw Pam one day at the restaurant he just ran up to her like he had known her for years and said "You're the lady on the TV!"   She became his new friend and they ended up going out to ride the carousel together!  

In fact, Steven liked Pam so much that when he saw her a second time up on a stage at the theatre presenting a donation plaque to Pi Kappa Phi fraternity Gear Up Florida Bicycle team, he ran up on stage and wanted to sing songs with her and the frat boys!  It even surprised Dave and I at how outgoing Steven was with people he hardly knew!  Pam gave him the microphone and he entertained everyone for almost 20 minutes! 

Dave, Meredith and I (Emma was having fun playing in the castle) just stood there laughing in amazement at the charisma he had with these people!  Steven ended up being in all their "formal" pictures and the great guys from Pi Kappa Phi gave Steven a real biking shirt! Steven and the girls stayed for parent's night out having a blast with Pam, the Pi Kappa Phi guys, and GKTW volunteers the whole evening!  That was definitely Meredith, Emma and Steven's best night! (and Dave and I spent a wonderful evening at Epcot alone!) Steven in particular cried when we came back because-- as he said "I'm still having fun--you go back bye-bye and I stay with my friends"   Thanks  GKTW volunteers, Pam, Andy (Steven's other big buddy!) Ty, Lance, Josh, Ethan, and the rest of the fraternity for making it such a special night!

As far as specifics go--we were able to experience seven different parks!   Our family was treated so wonderfully everywhere we went.  The girls loved Animal Kingdom the best while we think Universal and Nickalodeon Studios was Steven's favorite!  We had a couple unique and very special moments during our stay that we wanted to share with you.  As we've said before we believe God has his hand in everything.  What we used to chaulk up to coincidence, after going through what we have with Steven, we now believe is God trying to tell us something.  We now look at "coincidences" in a whole new light.

For example,  (bear with me on this somewhat lengthy description) when the people from Make-A-Wish came to our house initially to "grant" Steven's wish, Steven had to be the one to say he wanted to go to Disney World. Steven didn't really comprehend what "Disney World" was but he kept saying "I want to see Pongo and Perdida (who are dalmation dogs in one of the older Disney sing along videos).  They are his current favorite Disney characters.  The whole three weeks prior to leaving he kept saying "Am I going to see Pongo and Perdida?"  This made me nervous since it wasn't like he was asking to see Mickey Mouse who I knew we'd be able to find. 

Since Steven was somewhat obsessed with this I actually called both GKTW and the Disney "hot line" and asked if Pongo or Perdida were anywhere to be seen at Disney or if not were there any 101 Dalmations exhibits that we could pass off as Pongo and Perdida?  Unfortunately the answer was no.  When we first arrived at GKTW we all got out of the car with the kids exclaiming "We're at Disney World!"  since the entrance to GKTW looks like a mini Disney World.  We all walked  into the welcoming center and, upon entering, Steven see's a big screen TV--where he begins jumping up and down excitedly yelling "There's Pongo and Perdida--I knew they would be here!"  I almost started crying.  Although the video wasn't the real Pongo and Perdida, it was an older Disney video with Dalmations that he THOUGHT we're Pongo and Perdida.   We couldn't have timed our arrival any better!  That "coincidence" set the tone for the rest of our wonderful trip!

Last night as Dave and I were laying in bed he reminded me of another unique thing that happened while we were at the Magic Kingdom.  We had stopped to sit down and take a little break.  Steven saw a pretty fountain kind of back in a corner that he ran up to wanting to through a penny in to make a wish.  As I was scrambling in my backpack for a coin, this nice man who happened to be standing there takes a penny out of his pocket and hands it to Steven.  Steven had his Make-A-Wish shirt and GKTW button on, and with his bald head, I'm sure he knew Steven was sick.   The man's name was Mike.  He proceeded to tell Dave and I that his law partner has a daughter who was diagnosed with Leukemia several years ago and is doing great.   She had done a Make-A-Wish trip also. 

Dave told Mike and his wife Dawn about Steven's website and they said they would keep Steven and our family in their prayers. They were a very thoughtful warm family.  It struck us odd but nice when he first asked "How's Steven doing?" and then asked "and how are his parent's doing?"  because a person we just met usually wouldn't ask about how we were doing with it all. He obviously had had a close experience with a family going through cancer.

We moved on and spent another three or four hours visiting the park.   The real "coincidence" came when we were leaving the park with throngs of other people trying to get to the monorails.  We decided to stop and take one last picture in front of the Mickey sign.  As were standing there among so many other people, who walks up but Mike and his family!   We were shocked to see that same family again! It's almost like God was using them to keep our eyes focused on the Leukemia success stories and to trust in Him, stop worrying and have faith. 

To us it was quite amazing that all day long we never got into real conversations with anyone and then it just so happens that the one person we talk to understands Leukemia and expresses not only his concern for our family but shares a success story as well. And better yet, what are the chances that out of 200,000 people visiting Disney World that day we would run into that same man and his family a second time four hours later?!!  Through this troubling journey God has put so many people in our lives to teach us something--maybe there really was magic in Mike's penny!

This Make-A-Wish trip was an experience our whole family will remember forever.  It helped us to re focus, get away from it all, have fun, count our many blessings and enjoy so many moments of joy and laughter from our kids.  THANK YOU Make-A-Wish and Give Kids the World--it was an amazingly wonderful wish trip that we will cherish forever.

Now back to reality--the countdown has begun.  Steven's cytogenetics report came back great!  YEA!  As it looks right now (we're still waiting on one half of another report) he is in a very strong remission and is in perfect shape to go into the transplant on June 2.  We are starting to prepare him and the girls.   My dad is coming next Tuesday for about six weeks (thank you mom and dad!!) We're making arrangements for the girls' activities.  The pressure is growing daily but we're reminded that God want's us to stay focused on the moment so that's what we're really trying to do. Steven is a strong kid with a strong spirit and an incredible desire to get better.

I will update once more before going in next week and then I plan to do short updates daily during our long stay.  Thank you to everyone for continuing to keep our family in your thoughts and prayers--we sure appreciate them! 

God Bless,

Lisa, Dave, Meredith, Emma and Steven (Diagnosed 1/29/02 PH+ALL, MONO 7 CELL)

Saturday, June 1--The night before

Dear Friends,

Since Lisa does most of the updating I thought she might like a break and I would write a little note on the eve of our going into the hospital for Steven's Bone Marrow Transplant.  We chose this picture because it makes us smile every time we look at it!  Steven truly lives for the moment!  His smile and his strength will help carry our family through the rough road ahead. 

As our family mentally prepares for this long hospital stay, I'm trying to think of what to write.  Our family has gone through the gamut of emotions.  The stress level over the last several months certainly could have pulled us apart, but rather, with God's presence and the support of each one of you, we feel stronger and ready to take on this upcoming battle. 

I would like to thank each one of you for ministering to our family during this difficult time through prayers, cards, emails, meals, jokes to help lighten the stress, watching Steven and the girls, guidance in keeping us positive, and just being there to listen when we need to talk.  We couldn't have gotten to this point without the support from each one of you.  Also, I want to thank Dr. Estrada and Dr. Grayson and their wonderful staff for giving Steven the effective treatments to get him into a good remission.  I have great confidence in Dr. Wall and her transplant team as we move forward into the transplant phase of Steven's healing.

As I look back at the past three months there have been so many instances of God's loving grace that has shown through in each one of you.  And there have been some subtle things that have happened that let me know that God is watching over Steven.   Among them, I'll never forget one night when Steven was having port problems and as the nurses were trying to access his port he screamed "I'm not sick anymore!!!!!"  We were supposed to be in the hospital about 2 weeks and ironically the next morning after that long night we got to go home because his bone marrow looked so good!  What could have been 14 days turned out to only be eight.   I also remember one night about 3am when I was having trouble sleeping because I was anxious and worried.  Steven was lying in our bed when all of a sudden he cuddled up next to me and reached out and held my hand as if to say "everything is going to be okay." 

God gives us opportunities to step outside of our element and pronounce our faith during times of great uncertainty.  I believe he has called me to let you know that everything is going to be okay.  This is uncharacteristic of me because I am one of those people that like to give myself an "out."  ie:  Things are going well but........  No outs this time.  I have great faith and belief that God is overseeing the healing of Steven and I think he is going to beat this Leukemia and be able to serve God and witness for him in a more profound way.  It's just NOT Steven's time to leave this earth.

I knew that I wanted to use a scripture to back this up and I just received an email from a man named Jessie Meeks from Brentwood, TN (whom I have never met).  He ended his email with Matthew 21:22 "I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, Go throw yourself into the sea, and it will be done.  If you believe, you will receive whatever you ask for in prayer."  Thanks Jessie for sharing.

Steven will be admitted Sunday at 4pm.  He will start receiving the pre transplant medication immediately and is scheduled for surgery on Monday morning.   He will be having a central line (Hickman) placed on the opposite side of where his port-o-cath (or his "crab" as Steven calls it) is.  The big pre-transplant chemo drugs will start Monday afternoon.  These high dose chemo drugs will be used to "wipe" out his immune system to get it ready to accept a new (Meredith's) immune system.  This regimen will go on for nine days with the actual transplant scheduled for the morning of June 11.  We will try to do short daily updates to keep everyone informed during our hospital stay. 

Please keep us in your prayers and thanks again for your friendship and support.

God Bless,

Dave, Lisa, Meredith, Emma and Steven (Diagnosed 1/29/02 PH+ALL, MONO 7 CELL)

Pre-Transplant Days June 2-11--Monday, June 3  T-8--meaning 8 days until transplant day. We've made it through the first 24 hours!  Steven did very well going back into the hospital.  My friend Lisa Rosenfeld had a great idea of going in early to decorate his room so it would be ready for him upon arrival so Lisa, Tonya and I went in to make it look special and "inviting" (or as much as you can to a 10x10 sterile room).  We got there around 4pm and it's amazing how fast things start. I took this picture prior to him starting all the meds.  I'll have to say the first night went better than I expected.  Steven was understandably nervous and anxious but overall he did great.  As I've said before he does things his own way--he refused to sleep in his hospital bed!  Instead he made me sleep there and he slept on the pull out chair!  That's Steven!  He slept pretty good even with the nurses coming in at night.  Today we dove head first into the BMT process.  His surgery went well in the morning and exactly at noon as planned they started the big chemo drugs. Steven has been very drugged up and not feeling very well pretty much all day.   He's a little on the sad side wanting to "go home" but I'm sure he will get used to his new room soon enough.  He's been so groggy that he's spent most of the day sleeping.  We're trying to take turns sleeping there as much as we can so Dave's going to sleep there tonight so I can spend some time with the girls.  It's great having my dad here.  Grandpa Charlie has taken on his new parenting role with such enthusiasm and patience!  The girls love having him here and he has been so helpful! At least the wait is over and as Dr. Wall told us --at least now we can focus on the task at hand--and that is getting Steven well!!

T-6  Wed. June 5--So far so good.  Steven's hanging tough. The nights get kind of hard but luckily Dave and I are able to switch off so we can catch up on sleep.   Things are progressing nicely as Steven appears to be tolerating the heavy dose chemo pretty well.  This morning a nurses aid came in and Steven said "Good Morning!" and started chatting with her.  She made the comment that Steven was a "breath of fresh air for this unit."  Steven really is quite amazing.   Here he is confined to a 10x10 room, taking very high doses of chemo and five other drugs to prevent complications, has a double lumen central line implanted in his chest, tubes everywhere, no hair and this morning when he woke up the first thing he said was "Mommy--it's a great day!"  His attitude is definitely something I can learn from.  When Dr. Wall came in the room today she commented that "Steven's room just gives out good vibes!"  Thanks for all the prayers!  I'm off to bed for some needed sleep!

T-5 Thurs. June 6--I'm happy to report that it's been another "smiley face" day!  We have a daily calendar that we draw a picture of how Steven's day was and we were happy to draw another big smile!  Dr. Wall said that Steven's liver levels (the Busulphin could damage his liver) look very good.  She gave him a medical  "A+" for the day!  He did have a little breakthrough vomiting in the middle of the last night but overall he's been feeling very good. Tomorrow he finishes the Busulphin and starts another big chemo drug called Malpholin (sp?)  It's a huge "throw up" producing drug so they will be increasing his Zofran and just watching him a little closer.  He will take this drug until Tuesday's transplant.   He is visited every day by the Physical Therapist and the Child Life Specialist who come to do "play" therapy!  They even brought in a mini exercise bike that Steven loved!  The goal is to make sure he get's out of bed and moves around.   With him feeling so good, getting Steven to STAY in bed has been more of the issue!!  He's moving all the time! This has presented somewhat of a challenge since he's attached to so much tubing and the monitoring pole. Luckily, if he pulls to hard or moves too fast it hurts so he has learned to slow down just a little bit.   If you would like send send Steven a card (they don't allow anything else except cards) the address is: 

Inpatient Steven Trapp 7700 Floyd Curl Dr., San Antonio, TX  78229 Room #389A BMT Unit. 

One last note, it made me feel so good when Dr. Wall made the comment "I can't walk through Methodist Hospital without someone stopping and asking me if I'm the doctor treating a little boy with Leukemia from University United Methodist Church and asking how he's doing." We really appreciate everyone's concern and caring and especially all the prayers--please pray for another A+ day!!!

T-4 Friday, June 7--Another good day so far.  He started on Malpholin this morning and hasn't thrown up yet!  When Dr. Wall and her partner Dr. Grimley came in I asked them how much Zofran (anti-"throw-up"  drug) he was getting and they kiddingly said "enough to pay for his college education!"  It's obviously working great because Steven has been very happy, engaging, and normal.   They don't expect much of a change until transplant day.  Dr. Wall's motto is "Dare to be dull!" Meaning--they don't like surprises--they want things to go smoothly.  We feel so blessed that so far, medically things have gone very smoothly!   This picture is of Steven taking his evening "bath"!  He has to have his dressing changed every night.  The longer the soak time the better the dressing change goes! 

So far, probably Dave's and my biggest "issue" has been just getting enough sleep!  Steven has learned to sleep through most of the all-throughout-the-night nurse visits but it is definitely harder for Dave and I (and Lisa R. too) to get any consistent sleep. They seem to come in every thirty minutes to do something like change a line, stop the incessant beeping from any one of the five different monitors, check his vitals, or administer medications.  Thank goodness Steven is doing well enough that we can switch off nights so we get a decent night sleep at least every other night. With the help of Lisa Rosenfeld we have a good schedule of our allowed two per day visitors so we are getting some breaks and Steven get's fresh "playmates" to entertain him!  We ask for prayers for Steven for a medically "dull" weekend!

T-3 Saturday, June 8--Thank goodness for Zofran!  We noticed last night when the Zofran started wearing off because Steven would quite suddenly comment that he had a tummy ache and we knew to get more Zofran in him quick!  This morning was Meredith and Emma's first ever swim meet.  Since it started at 7:30am a very nice friend (thanks Jodie!) came early so Dave and I could be at the meet.  I left before Steven woke up and felt very bad when during the meet she called to let us know that he had been throwing up and was not too happy. At first I felt bad being at the swim meet while Steven was throwing up (that mom guilt thing!) but luckily Jodie is so good with Steven that within a short time he felt better and they were playing again.  Since Steven is naturally getting most of our attention right now, and since it wasn't medically threatening, I felt at that moment it was more important to be there for Meredith and Emma to cheer them on. The rest of the day has been good--he's enjoyed a visit from his babysitter Amanda and even got to do some "guy" playing with Doug Grimm!  So overall he's had a blessedly medically "dull" day! 

T-2 Sunday, June 9--A pretty good day.  Steven has been a little more subdued today.   We think the effects of the high dose chemo have started to kick in.  He's had some vomiting but fortunately it didn't last long.  He's been happy but wanting to do more cuddling and relaxing versus his usual moving all around his hospital room.   Today is a big day in that he received what we hope will be his last big dose of chemotherapy ever.  They have started the meds which prepare him for transplant. As of today the chemo has wiped out all his stem cells. What this means is he has no immune system left. Naturally we have a variety of emotions going right now but we have a lot of faith that God is here every step of the way and with Steven's inner strength we believe it's all going to work out great.

T-1 Monday, June 10--Well, now were counting down the hours.  Steven had somewhat of a tough morning.  He woke feeling very tired and nauseous.  The doctor said that Steven is probably starting to develop some stomach "ulcer" type things as an effect of the high dose chemo.  He's ordered pain meds of which Steven had his first dose this morning.  Once again he was pretty subdued wanting to just relax and watch Spongebob Squarepants--wonderfully educational programming!!! At this point we are indulging him with any show he wants!  By this afternoon, however, he was much more energetic getting down on the ground to play hide and seek with Alice and building some great Lego towers with me!  Dr. Grimley came in and gave us all the details for tomorrow.  Meredith goes in at 6am to be prepped for the bone marrow harvest scheduled for 8am.  It is general sugery so she will be put totally asleep.  The surgery lasts about 1 1/2 hours.  For those of you interested in exactly how they do it--they take a long needle and extract her bone marrow (stem cells) one teaspoon at a time out of each hip bone.  It ends up being about 10-12 needle sticks per hip.   Thank goodness she's asleep!  After the harvest they send the marrow (approx. 1 pint) to the lab for filtering and then they bring the fresh bone marrow up to Steven's room where it is transfused into him.  After Meredith recovers enough they plan to wheel her into Steven's room so she can see exactly what she did for him and watch her gift of bone marrow being dripped into him.  Throughout the transfusion Steven will be on a heart and oxygen monitor.  Then when all goes well, within 7-21 days he should start producing new stem cells and build a new immune system.  We are bringing in a cake to celebrate Steven's NEW birthday--he'll have two birthdays a year! 

Today has been very busy so I haven't let myself think too much about exactly how tomorrow will go. As I was driving to the hospital today I was listening to CCM  Steven Curtis Chapman.  He has this song titled "Bring It On".  There have definitely been times throughout our journey when Dave and I have wanted to wish away the hard times we were going through.  But then we realized that it's during the tough times in our lives that we are drawn closer to God.  In the song Bring It On, he says "I'm not going to run away from the things that drive me closer to Him."   Even when things have gotten tough--our faith has grown stronger. We believe that tomorrow will be the beginning of a lot of good days to come.  Although the road may still be rough at times, we know God's compassion and grace will carry us through. Thank you so much for all your prayers--they have been and will continue to be answered.  So as I told Dr. Grimley--Bring It On!  Steven's strong, we have faith, and we will make it through.  

POST TRANSPLANT--T-0 TRANSPLANT DAY-- June 11,2002--There it is!  This picture was taken right after they started the bone marrow infusion.  Since Steven was doing so well they let him sit on the chair (he still likes the chair better than his bed!)  He wore his Superman shirt to commemorate the event. If you'd like to see more pics from today just click on the picture album and scroll down.

It was an amazing day to see one of our children giving the gift of life to another.  Without Meredith's stem cells we knew Steven would not survive.  The bone marrow harvest went terrific as Dr. Wall and Dr. Grimley were able to draw out blood that was rich in stem cells. We found it joyously amusing as Dr. Wall carried the bag of stem cells to us and said "Look at this blood, it is soooo....rich!"  She had that same look that our obgyn's had when they passed our kids to us after they were born.  Dr. Wall was coddling this bag of blood wrapped in cloth towels and showing it to us as if it were a new born baby.  In a sense, that bag of stem cells truly is like a new born child.  Dr. Grimley said it was a near perfect harvest.  They like to see 3-5 million stem cells per unit of measure and Meredith's harvest had 5.65 million.  God is Awesome!! 

Steven tolerated the infusion very well not showing any side effects.  As we have learned to appreciate, dullness is great and today we had no surprises.  Now we sit, watch, and wait.  This waiting game includes managing graft vs. host disease (rejection), infection (Steven's counts will go to zero), pain from severe mouth, esophagus, and stomach sores, and ultimately engraftment of the transplanted stem cells from Meredith.  Tomorrow is day 1 and counting.  They watch extremely closely for 100 days where at that point the risks of acute problems start to diminish.  So we still are on the uphill side of the mountain but we are nearning the top.  The doctors have said the the "roughest" road should be between June 13-22 when hopefully after that Steven's body should begin the recovery stage.   But for now we are relishing in the beauty from the gift of life that Meredith gave today.  She summed it all up when she said --"When Steven is 14 years old--I'm going to make him do my chores for a whole week!"  After today's bone marrow transplant--we look forward to and are praying for many more years with a healthy Steven.

T+2 Thursday, June 13, 2002--The last two days have been a little tougher.   Steven has had a lot more nausea and vomiting due to the tissue damage in his stomach. Over time his stomach will re build the tissue and the nausea will gradually subside.  He's now on TPN which is "steak in a bag."  He's sleeping a lot of the day due to the Fentanyl pain meds.  He does, however, have periods of time where he is happy, engaging and playful!  Overall he is hanging tough.  I asked him this morning if he slept good and he responded "I slept really good!" So he still has his optimistic attitude!  Dr. Grimley pointed out that he is still "well above the curve" meaning Steven's response so far has been above average!   So luckily, no surprises today.  We've had soooo many wonderful emails, cards of support and lots of prayers over the last couple of days--all of you "prayer warriors" are truly making the difference!  THANK YOU!

T+4 Saturday, June 15, 2002--Not much new news.  Everything is going as expected.  The added Phenergan has helped decrease Steven's nausea and vomiting.   He only threw up once last night and upon waking up today but right after he was done he wanted to play!  They also had him on Lasix to drain off some extra fluid.   I believe we went through about 25 pullups that day (he's pretty much always in a pull up now since he doesn't have much control over his "needing to go.")     He has now verbalized that his mouth hurts so the mucositis is kicking in but it's not too bad yet and it may not get that bad--we just have to wait and see. Steven still likes the "idea" of food.  Right now though, whatever goes in comes right back up.  He asks for and we bring in all sorts of food to satisfy his "craving" however, most of the time he won't even take one bite.  Dr. Grimley says this is very normal. Last night Steven went to bed with a PBJ sandwich nestled in his arms since every time I tried to take it away he'd say "No mommy--I'm going to eat it in three minutes."   This morning he had a good report--in fact very good.  Dr. Grimley said that he is responding better than 90% of other kids at T+4.  We are so happy about that although we know that how he responds today is no indicator of how he may respond tomorrow--back to the BMT motto--one day at a time and dare to be dull!

T+5 Father's Day, 2002--This is a hard one.  Steven had his worst night yet last night.  Steven's mouth and stomach tissue damage has increased dramatically over the last 24 hours.  He was in a lot of pain and not wanting to play at all.   Dave was there and was spending the night.  It's times like this that make this whole situation so hard because I just want to drop everything and be there every minute of every day but I know I need to be here for our girls also. Thank goodness we have Grandpa Charlie here helping us out. Anyway, they have upped the pain meds significantly so now Steven is sleeping until it wears off then waking up crying until they give him more.  I'll be there later this morning and overnight so Dave  can have some one on one time with the Meredith and Emma.

I think on this Father's Day it's hit Dave pretty hard.  We knew these side effects were going to happen and we are blessed that until today it hasn't been too bad.  After five months into this and going on two weeks in for the transplant, the day to day pressure and lack of consistent sleep starts to take it's toll.  As Dave and I were talking I remembered a verse I had read from a good book my friend Sue gave me called  "Daily Splashes of Joy".  It is from Romans 5:3--"We also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope.  And hope does not disappoint us.."  We ARE persevering through this and God is giving our family the strength we need.  Not that it's been easy but it's days like this that we really rely on our faith and hope.  I guess the true test of character and faith is how we handle the times when things aren't going so well.  We know that this too shall pass and Steven will get through the mucositis and will want to make snakes with playdough again soon. But for today we're just going to do a lot more comforting and cuddling.

T+6 Monday, June 17,2002--Another very tough day.  Last night was long as he started running fever about midnight.  They started Vancomycin and Cefapine.   He's on higher dose Fentanyl for pain, Benadryl for the narcotic induced itching, and Phenergan and Zophran for all the vomiting he's doing.  So today he is again pretty much non responsive, has fever, is vomiting up nasty bile, has bad diarrhea, can't swallow his own saliva due to the mouth sores so he's spitting and drooling, he can't get in a deep sleep, is shaky, and is overall just feeling pretty darn miserable (sorry if I'm grossing you out -- it's just the reality of our situation.) We changed his bed four times in the middle of the night last night and I don't expect tonight to be much different. He can't keep Tylenol down so we just have to wait the fever out.  Cold wet washcloths on his head have helped some and they seem to calm him a little too.  He barely talks because it hurts too much to say anything. I've learned though that even though he may look asleep he usually is listening to what I say. 

This morning we had a neat thing happen. As Steven was lying in bed looking asleep and pretty miserable, my friend Avery  was talking to him telling him about how people were praying for him to get better and that he must have a direct line up to God with all the prayers going his way.  He immediately opened his eyes and said so clearly "Hey, where's my Angel coin?" Our friends Priscilla and Roger Cude had sent Steven a neat coin with an Angel imprint on it that he has become quite attached to.  It was neat that he connected Avery's prayer comment to his angel coin.  When I gave it to him I think in some small way that coin and Avery's comment helped calm him a little and allowed him to drift off to sleep. 

Anyway,  we knew these "dog day's" we're coming and we expect them to last throughout the week. The good news is that the important numbers like his liver and kidney function look good and that's what really counts.  Everything he's experiencing now is normal and are just side effects from all the high dose chemo he was given prior to transplant. He is getting a platelet transfusion tonight (if anyone locally could donate platelets within the next two weeks Dave and I would really appreciate it since Steven will need several more platelet transfusions and platelets are harder to come by since we're told they can only be stored for five days.) It does not matter what blood type you are.  You can donate at the main SW Blood and Tissue Center on I10 or at Methodist hospital.  The only bummer is that it takes about 2 hours to donate platelets but if you have the time we would really appreciate it. To get more specific info on donating you can go to their website at www.bloodntissue.org.   THANK YOU!!!

Anyway,  for now instead of day by day we're just working on minute by minute.  He is hanging tough and we are looking forward to seeing his wonderful smile again soon. 

T+7Tuesday, June 18, 2002--Dave's turn.  Well, today and last evening have been particularly difficult for me as a father.  There have been, however, some very profound moments that have made me appreciate the fighting spirit of Steven.   All afternoon he was trying to stay strong as difficult as that was for him.  While the nurse was in the room checking his vitals, I was sharing with her how difficult it was to see him so down and not wanting to play.  After she left the room, Steven saw some clay at the foot of his bed and motioned to it that he wanted to open it.  We didn't play too long and it was mostly just him sitting up watching me make shapes with it.  He didn't say a word the entire time because it hurts too much for him to talk. I think he wanted me to know that he's "still in the game."  

The most difficult emotional experience I have had thus far was last night when Lisa returned to the hospital to spend the night with Steven (especially now he wants his mom during the middle of the night!) it was a feeling comprised of satisfaction, joy, and sadness as it made me appreciate the relationship that exists between a son and his mother.  Steven was so strong all day in the midst of a lot of pain.  When Lisa walked in the room he looked at her, tears welled up in his eyes and he broke down and cried.  It was at that moment that I realized how much his mom means to him and how much he was hurting inside.   Steven held his emotions in balance all day long while he was around me but he couldn't hold them any longer after he saw Lisa.  I was so proud of him for how strong he had been all day, so joyful to see the love that exists between him and Lisa, and so sad to see how much he is hurting.  It was a very tough day, but included in this day was a transparent moment that defines the relationship between a mother and child. 

So for now instead of day by day we're just working on minute by minute.  He is hanging tough and we are looking forward to seeing his wonderful smile again soon. 

T+8 Wednesday, June 19--Pretty much the same story today.  Steven had a marginally better night last night but has begun shaking a lot from the Cyclosporins.   He is receiving daily doses of Neupogin to boost his white blood cell count.   He will have another platelet transfusion in the next two days.  He may need platelets every other day until Meredith's cells start engrafting.  I've had several people email needing more info regarding donating platelets in Steven's name.  I found out you need to make an appointment by calling the South Texas Blood and Tissue Center.  The only place you can donate platelets is at the main SW Blood and Tissue Center on I-10 and Vance Jackson.  Their phone number is 731-5555.  You need to give them his name and that he is at Southwest Methodist Children's Hospital.  Thank you to all of you who have already scheduled appointments.  It's neat to know that especially with platelets he will quite possibly get your exact platelet donation (versus just a credit under his name.) We really appreciate your help.

Last night as I sat next to Steven just rubbing his head trying to help him just relax, I started thinking of how during times like this it's so easy to think in a bubble with "this is only happening to us" type thinking.   When in reality we have met SO many people in the hospital system going through the same or worse scenarios.  I know we've had a lot of prayers go out our way for Steven but today I would like to ask for some extra prayers for two other special kids in the rooms on either side of Steven's.  Please pray for Andy a little five year old boy from Arkansas who has Acute Myelogeous Leukemia.  He received a cord blood transplant yesterday.  He is a very cute little boy with a sparkle in his eye and a very nice family. The other patient is a 20 year old girl named Shawna with almost the same cancer type as Steven.  She is receiving a stem cell transplant next week.  As her dad-Mike, and Andy's dad and I we're talking in the hallway I noticed we all had that same "positive but a little anxious" look on our faces.  With all the tough cases they have in the Bone Marrow Unit, I've come to REALLY appreciate all the special nurses, Dr. Wall, and Dr. Grimley.  They take such good care of our precious children and at the same time know how to gently handle us tired, anxious, and sometimes uncertain parents.  Thank you for your extra prayers for the patients and the medical staff.

I've had several people email asking about how Meredith recovered.  She is doing great!  She bounced back within about four days and is moving around like it never even happened.  A week later when she was nervous about an upcoming swim meet she did, however, try to use it as a scapegoat.   She gave us the "Mom, I think my back hurts again--maybe I shouldn't swim"  But when I told her no deal she happily went to the meet and even came in 2nd in her race!  We feel very blessed that it all went incredibly smoothly.  Well, I'm off to the hospital for the night.   Steven did eat one marshmallow from a Lucky Charms box so hopefully that is a sign of better days to come!

T+9Thurs. June 20,2002--Thank goodness for Fentanyl.  Steven is pretty much on a drug induced haze which is helping him to get through this really tough week.   His mouth, esophagus, and stomach sores are bleeding and he can't talk at all.   Fortunately a lot of the throwing up has subsided.  Today we had our first bit of REALLY good news!  He had a white blood cell count today of .2.  His body has started producing  what are called Segs and Bands which are the precursers to white blood cells.  In our terms this means HE'S STARTING TO ENGRAFT!!! YEA!!!  If all goes well we should start to see a steady increase in his white blood cell count everyday.   Dr. Wall came in all thumbs up today.  She likes what she sees.  His liver and kidneys are holding steady and everything looks good for the engraftment.   By looking at Steven you'd never know he was medically getting better but as more white blood cells form his mucositis will start improving and his wonderful smile will come back.  For those of you who know him he is quite the talker so not hearing anything for five days has been hard.  The blood cultures did grow out three different pathogens which means he does have an infection but the two different antibiotics he's on are holding his fever in check.  Dr. Wall believes that we should see a marked improvement by hopefully this weekend.  This has really been a long week so it was so good to get the news that Meredith's cells are starting to find their home in Steven. 

T+10 Friday, June 21, 2002--Steven's white blood cell count grew to .9!!!   That is a big jump in 24 hours.  Dr. Grimley was very pleased saying it was a larger jump than he would have expected.  YEA!!!  It's amazing what getting some good news does for Dave's and my mood.  He had a normal temp today so the antibiotics are working great.  So medically Steven is progressing smoothly, however, physically Steven still is pretty miserable.  Dr. Grimley said that by Sunday we should see a marked improvement.  From last night to today I felt like he had a marginally better night in that he didn't throw up.  He still can't swallow and is still spitting up a lot but today at least he's trying to talk.  He is being a little more expressive by showing anger.  Over the last week he has been so lethargic and non responsive that to see him get mad and want some control over his care is a really good thing.  His anger is shown mainly through his facial expressions as shown by the incredible "mad face" he gave to Dr. Grimley when he walked in the room this morning. Someday he will understand what a godsend his doctors have been! 

In looking back over this very hard week I am still amazed at Steven's strength.  Every night he takes a  bath to help soften the central line bandages before we do a dressing change. Soon after his central line was implanted he started wanting to be the one to peel off his bandages. This is a big deal since they are practically glued on and even with the softening from the bath his skin is so sensitive that it still can hurt.  Every night this week, feeling miserable and with his hands shaking, he still managed to take off the dressing himself.  It just shows the strength of someone who wants to get better and with a white blood cell count of .9 and growing--we pray he is on his way! 

T+13 Monday, June 24, 2002--I've had several people email concerned since I hadn't updated in several days.  After the last nine hard days and nights, I have taken a mental break and have tried to just focus on Meredith and Emma when I've been home.  Sorry if we've worried you! 

Seven is doing better each day! We continue to get good reports on his engraftment!  His white cell count is now up to 6.5!!!  It has doubled every day!  Dr. Wall and Dr. Grimley are extremely pleased with his progress.  We are now entering the next phase of recovery which will get us closer to going home.  He needs to get off all IV pain meds, start eating and drinking on his own, get off TPN (IV nutrition), be fever free, and be able to take all his medications by mouth.  These are pretty big hurdles considering where he is today but we are getting there bit by bit each day. 

To give you an idea--a normal mouth, throat and stomach has 14 layers of tissue.  At this point I'm told Steven's mouth, throat and stomach has about 1 to 3 layers with hopefully a new layer growing each day.  It's not an even growth so some areas will have more than others.  Needless to say that's why he continues to do a lot of spitting instead of swallowing, is just starting to be a little more verbal, and still winces if we touch his throat.  We are, however,   seeing marked improvement daily.  His body has to eliminate all the dead tissue so we have seen more vomiting and diarrhea but that's a good sign he is growing new tissue.  Now we are watching for any developing fever or skin rash which would be associated with GVH (Graft vs. host disease or in our terms "rejection").

As I've said before, one of the hard things over the last nine days has been not hearing Steven talk.  It's just so NOT like him to be quiet. Over the last ten days Dave and I have become so used to talking to him normally yet not expecting any response. Yesterday you can imagine my happiness when as we were laying in bed cuddling I said "I love you Steven" and he very quietly responded "I love you too mommy."  He IS getting a little better every single day.   Thanks again for all your prayers! 

T+14Tuesday, June 25--He's talking again!  It has been so nice to hear Steven's voice.  It's sometimes hard to understand him but he's trying!  We tried to switch him off of the IV Fentanyl to  oral Methodone for pain relief and as Dr. Wall put it so eloquently "we flunked."  Yesterday when they stopped his fentanyl he became extremely agitated and upset with me!  He kept saying "you go away--I can't like you!"  Since I was just so happy to hear him talk this didn't bother me (well, maybe just a little.)  Anyway, we tried again today and he was such a trooper taking the oral Methadone but within ten minutes he threw it all up.   His stomach just isn't ready.  He did swallow and keep down two bites of watermelon so we are gaining some ground.  They stopped his Neupogin (a white cell stimulator) and his counts dropped only to 5.5 (this is great because usually when they stop it the counts drop by half so he is holding strong!)  Today he woke up and he gave me a huge smile and said "mommy I slept really good!" Most importantly he has wanted to get down from his bed and play. 

Steven had a huge day yesterday when Tony from Ken Batchelor Hummer Dealership brought him a remote control Hummer.  Steven had been very agitated just minutes before but when Tony came in with that car Steven slowly came around.  Tony was so good with Steven motivating him to finally sit up and race the car all over the room!  Steven loved ramming the car into his hospital room's door!   I guess it was a way to take out some pent up frustration!  Steven was all smiles with Tony and the Hummer!  THANK YOU Tony and Ken Batchelor--you made Steven's day!  I borrowed the nurse's camera so hopefully I can put a pic of Steven with his Hummer on soon!

T+15 Wednesday, June 26--This was a big day!  Steven was allowed a two hour pass outside the hospital!  As you can see from the picture, Steven was pretty aprehensive about leaving.   It took about thirty minutes to try to explain to him that he was able to leave his room and go for a ride in our car. He was clearly nervous and trying so hard to comprehend that he could leave but had to come back.   We got him dressed in real clothes and he even wanted to wear his Batman underwear!   He kept saying "I don't have to take my pole?"  meaning his big IV pole that he has dragged beside him for a month now.  He was a little wobbly as he walked out of the room. Getting him out is a way to gain some normalcy and hopefully encourage things like eating and drinking!

The biggest hitch came when his nurse Julie told him he had to wear a mask until he was inside our car.  To say the least that did not go over very well.  We tried everything and just when I thought he wasn't going to get to leave, Julie said "bury your head in your mom's shoulder's and just get outside quickly!"  Steven was exceptionally quiet and seemed to be looking in amazement just taking it all in.  He decided he wanted a blue ICEE (why couldn't it have been something easier?)  so I ended up going to three different gas stations until finally we ended up at Target where I called them from my cell phone and asked them to bring an ICEE out since Steven wasn't allowed to leave the car.  He took one sip which I don't think he even swallowed and within about ten minutes, as I was driving down I10 hwy, he threw up all over his seat.  Poor Steven, he was so upset saying "I can't throw up in the car!" but he couldn't stop himself.  Luckily, that long moment of stress passed and we ended up driving to Fiesta Texas (Six Flags) where we parked along the street and watched all the roller coasters.  We talked about how sometime soon we will take him there to celebrate him getting better.  We returned after about two hours and he gladly went back to the security of his hospital bed.  I was prepared for him to get upset about going back but he seem relieved and ready to take a much needed rest.  This was a lot in one day. 

The major hurdle we're still working on is getting his stomach to keep anything down.  He's off IV fentanyl and down to twice a day IV methodone.  They stopped his TPN today so hopefully he will want to start eating and drinking soon.   Dr. Wall has said that barring any complications, as soon as his stomach can keep the twice a day cyclosporins (anti rejection drug) in without throwing it back up, he will be ready to go home.  That hopefully will be within the next week. 

Besides feeling the excitement about Steven coming home, I'll have to admit I am surpisingly anxious.  One of the nurses commented awhile back about "this is the safe place" and "it's a lot more risky out there" (meaning outside the hospital.) That comment keeps playing in my mind and today with our little two hour reprieve came with it all these new worries about germs, sicknesses, possible late night trips back to the hospital, something sudden happening and not having a nurse right there, managing three kids, going daily to the hospital's infusion center, my dad going back to Chicago, Dave going back to work, and even adjusting back to life at home.  Today though I have to remind myself that God is in control and it will all work out.  We are just so thankful that Steven is doing great and hopefully by this time next week will have our whole family home together again.

T+16 Thursday, June 27, 2002--This has been kind of a quiet day for Steven.   He still seemed tired from yesterday's big adventure out of the hospital.  He was unhooked again from his IV today and we went to the BMT "playroom" (not much of one) and played with a basketball set that our friend Alice sent him.  He got so tired so fast.  We have to keep reminding ourselves that he has been lying in bed for a month and throwing up virtually everyday many times so I'm sure he feels very tired.   I know after he gets home his energy level should return quickly.  Dave offered to take him for another ride but after playing with the basketball he was too tired and preferred to play quietly in his bed.  Meredith did win the gold star today when she told Steven she would give him a present if he ate something. After some hesitation Steven ate one (yes, one) Apple Jack's cereal piece and took one sip of water.   He didn't act like he liked it but luckily it didn't come back up--YEA! His taste buds are still all out of wack so things don't taste the same. That was it for food for the day but we're happy with it since every bite he takes get's him closer to coming home.

We were a little concerned that his WBC counts dropped to 2.6 today but Dr. Wall said that is normal  after stopping the Neupogin.   His red cells and platelets are still holding.  He also had a little "glitch" according to Dr. Wall in his liver function. The liver and kidney functions are the real important ones.  She said it's nothing to be alarmed about and she has taken him off a few things that might be causing the problem.  With him vomiting still today coupled with his counts being "off" a little, Dave and I are a little worried tonight.  We realize that their are going to be ups and downs with Bone Marrow Transplants and the first 100 days may sometimes feel like a roller coaster. Overall Steven has done great with everything  being a success so far, however, hearing even one thing that may not be so good makes it's hard not to be concerned. 

I read a verse tonight from a neat book my friend Sue gave me--it says "Worry makes a heart heavy, a kindly word makes it glad" Proverbs 12:25.  All the kind words, emails, and  cards continue to help Dave and I get through this uncertain time.  Today we pray for a good report on Steven's liver function and a growth in his White Blood Cells!

T+17 Friday, June 28, 2002--It's 9:30am and it's a good day already.   Steven's liver counts have started coming back in the normal range.  Not much explaination for why the numbers went out of range but all signs point to good.  Also his WBC counts held at 2.5 so that's a good sign also. 

Today we are entering unchartered territory for Dave and me.  Dr. Wall would like Steven to come HOME for about 4-6 hours.  Both Dave and I have been so uncertain about "dangling the carrot" of having him come home for only for a short time worrying that it might make things worse. We thought we'd just wait until he can come home for good.  

With the problem, however, of Steven not wanting to eat or drink and not knowing if he can keep it down anyway, Dr. Wall and we now feel we have to try something different.   Coming home might be just what he needs to feel normal and do normal things like drink and eat.  Actually she's not as concerned about the eating solid food as she is about him drinking fluids.  The only thing keeping him in the hospital is that he needs IV fluids to keep his kidneys in check and he has yet to take the oral anti rejection medication.  Tonight back at the hospital we are going to try to get him to take it and hopefully he'll be able to keep it down.   As soon as he has a couple of days of drinking fluids and taking oral cyclosporins then we're home for good!  We've decided that after being home and then having to go back to the hospital one of two things will happen--he'll either get really mad which might spur him to drink (and hope it stays down) or he will be happy to go back which tells us he's really not ready to come home. 

I am learning so well that all kinds of change--whether they be negative or positive still produce some level of anxiety.  I would never have dreamed that I'd be anxious about my son coming home.  Knowing he's going to be here in the next hour, I'm suddenly noticing the Pokemon cereal scrunched into the carpet and wondering if it's been there long enough for germs to grow on it--we'll I better go start vacuming, dusting and wishing away every germ in this house (is that possible?) 

T+18 Saturday, June 29, 2002--Steven's visit at home went pretty well.   He was definitely excited to come home. At first it really bothered me that Steven was so wobbly walking and tired so quickly. For Steven, however, just going up one flight of stairs or playing in his room is way more than he's done in a month.  He asked for nine different food items but couldn't actually eat any of them.  Even when tasting Fruit Gushers, his favorite, he spit it out saying "these taste yucky".  He doesn't have any taste buds yet since his mouth is just now recovering from all the tissue damage so everything tastes and even smells different. 

After about one hour at home he became very tired and asked to go to bed where he slept for three hours.  He ended up sleeping almost 17 hours today.  When he woke he was very quiet preferring to just rest on the couch. The final tally for food and drink for the day was one sip of lemonade. We realize even more clearly that his recovery time is going to take awhile.  Back at the hospital we tried the oral cyclosporin medicine twice, both times ending with him throwing it up within 30 seconds.  So he went back on the IV form.  I was so proud of him for taking this medication that is so nasty--it is in an oil base that cannot be mixed with anything.  As his mom, I felt so bad making him take it a second time knowing he was going to just throw it up again.  The hardest part is that he wants to eat, it's just that he can't keep anything down.  The nurses keep saying that it's still early, this is normal, and it's just going to take time and patience.

We're taking a break from trying the oral and just focusing today on getting him to try something to drink  This poor kid has thrown up more in the last month than I've probably thrown up in my whole life.   For a three year old--I admire his stamina.  He's coming home again for a couple of hours today and then back to the hospital for his IV cyclosporin and IV fluids to keep his kidneys in check.  Overall he is happy but   tired.    He's here--gotta go!

T+19 Sunday, June 30, 2002--We're Coming Home     -- In all the updates to date I don't think I've ever been at a loss for words.  Tonight I have sat here for almost an hour trying to think of how to express the dichotomy of emotions both Dave and I are feeling right now.     After 28 days as an impatient, at 8:00pm tonight Steven was officially discharged from the hospital. 

Tonight also is the night that Andy, the little six year old boy in the room next to Steven, died from complications stemming from his Leukemia and bone marrow transplant. Both Dave and I were able to talk to Andy's parents today.  When Dave saw them this morning in the PICU, Andy's mom was sitting in a chair rocking Andy in her arms.  I can only imagine what was going through her mind and what they must be feeling.  Please keep their family in your prayers during this incredibly difficult time. 

As much as Dave and I want to be jumping up and down with excitement that Steven made it through transplant, our happiness has definitely been tempered by what Andy's family is going through right now.  Here we are packing to go home while they will have to pack to go home--without their son.  When we entered the hospital that was my biggest nightmare for Steven--and here they are having to live it.   It just hits so close to home.   Today's experience has once again brought back the raw emotion of  knowing how fragile life is.  Through this almost exactly five month cancer journey, Dave and I have learned so clearly that life is meant to be lived day by day --not worrying about tomorrow or wishing away today but the importance of finding the joy in each day.  We also know it is easier said than done.

With the help of an incredible medical team, Steven has now made it over two major hurdles--getting into remission and making it through the bone marrow transplant. This race, however, is far from over. We now have the "100 days" as our next challenge.   When we reach the 100th day the risk of complications drops and hopefully then we will breathe a little easier.  Steven won't be considered "cured" until he is cancer free for five years.  This is part of our life and yet now I couldn't imagine any other way. 

Tomorrow at 8:45am starts a whole new routine which includes daily visits to the hospital's infusion center to check Steven's Cyclosporin levels, blood counts and other things.  During his visit he may be given blood, platelets, fluids or nothing. His counts today look good with his WBC at 2.1 (with a lot of neutrophils and monocytes so his body is producing the precursers to mature white blood cells--YEA!) His hemoglobin and platelets are holding steady also.  We know that at any point graft versus host (rejection) can occur. Steven is still extremely susceptible to infection so it is very reassuring to know how closely he will be monitored.  We will be doing his central line dressing changes and flushes at home until they remove it hopefully in the next couple of months.  Come mid July our lifestyle will change again in that my dad will return to Chicago and Dave will go back to work. 

Tonight, however, we are immeasurably thankful to see Steven taking a sip of chocolate milk and not throwing it up and being able to hold down his all important anti rejection medication.  We spent all day marveling at the hourly changes in his ability to eat and drink.  He still has the hallowed dark eyes from throwing up so much and is still wobbly but today when he said "mommy, I ready to play with Meredith and Emma" --that was music to our ears!  This journey is truly one step at a time.

T+22 Wednesday, July 3, 2002--We're attempting to get the hang of our new routine.  Steven has had kind of a tough time adjusting back to sleeping at home.  I think he actually liked all the incessently beeping IV machines!  He is sleeping very restlessly and seems a little over stimulated at home so he's not resting as much as he should.  He's a little on the crabby side at times (totally understandable!)   Come to think of it, our whole family is a little on the crabby side while trying to adjust back to another new routine --I keep telling myself--it's only been two days so we should cut ourselves some slack.  Getting Steven to eat and drink is still our biggest battle since most everything still tastes different.  We know he will recover better if he's eating, or at least drinking something.

With all the thunderstorms in the last three days, everyone is playing musical beds with the girls crawling into our bed to sleep with Daddy while I'm still Steven's bed partner since he is so used to sleeping with me at the hospital.  Last night I  said "Okay, Steven--tonight I will cuddle with you for a little while and then I need to go to sleep in my own bed with Daddy" to which he responded  "But mommy, I NEED you--you are so squishy."  I'm still trying to figure out-- "squishy"???? (I'm not so sure that's a good thing!)

Since the first night home was a long one, On Monday Dave took Steven for his first day at the Infusion and Transplant center.  Poor Dave, it was a looooong day!  He was there for about seven hours since Steven needed IV fluids due to being a little dehydrated.  Steven was very irritable and anxious trying to figure out his whole new "deal".  Dave was drilled by the nurse on everything we need to understand, keep track of, watch out for, call the unit on, and measure.  Because Steven's so "fresh" (their term) out of transplant they really monitor him closely.  The big number they watch is his cyclosporin level which they monitor daily.  The number they are looking for is around 300--today his level is 187 so he has a way to go. The dosing can change daily so we get a call everyday telling us how much to give him.  Steven still hates doing it but with every dose he is getting a little (and I do mean a little) bit better.  This is such an important drug as it controls if and how much his body is rejecting the new bone marrow.   On Monday his level was only 137 and by that evening Steven started getting the first sign of GVH (graft vs. host disease) in the form of a pin point skin rash all over his body.  It's itchy and irritating to Steven but on the rejection scale it's pretty mild.  Rejection can get out of hand very quickly hence this is why they may adjust cyclosporin levels daily.  

Today Steven has been a little more at ease and did well at the infusion center (lucky for mom!) We were in and out in about four hours.   His WBC count is still 2.1 so not much change yet. His ANC is 690 with the goal being at least 2000.  He's not leaving the house except to go to the hospital and he can't have hardly any visitors so hopefully we're keeping his infection risk is at a minimum.  Overall, Dr. Wall thinks he looks good for day +22!  (To see new pictures just click on the "Picture Album" icon!)

T+27 Monday, July 8, 2002-- We've made it through the first week home!   The last seven days have definitely been transition days.  I'm happy to report, however, that we feel much better adjusted!!  Steven is sleeping better, eating better, and drinking better (not back to "normal" yet but that day will come.) We thank God for these "better" days!  His mucositis has diminished dramatically and he is trying many more foods.  His favorite now is Star Wars Gogurts.  It is so nice to see him holding food and fluids down. 

Our nightly routine is still the most stressfull of the day.  He has to have his dressing changed, lines flushed and take his second daily dose of anti rejection medication.  He has become the king of negotiating.   By now though he knows we're not going to back down so when he's resolved himself that the medicine is not going away, he says "don't look at me" and then pushes the syringe full of the nasty, oily cyclosporin into his mouth all by himself!   The chocolate milk chaser is good for another three ounces of fluid (we have to keep track of all his fluid intake)  He truly has made tremendous strides in the last seven days!

Today's visit to the infusion center went great!!   His WBC count is up to 3.3 and his platelets are at 190!  He probably won't need another platelet transfusion in the near future (or hopefully ever!)  Thank you to everyone who donated platelets!  His cyclosporin levels dropped to around 150 so we have to increase his dose but that should help reduce the GVH rashes.   Over the last week he has had several GVH rashes but non too serious. Dr. Wall expects them to diminish over the course of a couple of weeks.  Right now our biggest concern is that Steven is slow in his walking and can't really run at all.  Dr. Wall told us that it most likely is muscle atrophy from lying in a hospital bed for a month.  It could also be an effect from Vincristine (chemo drug he received a couple of months ago) which can cause temporary muscle damage in the legs.  Fortunately she said either one is temporary and within time his muscles will stengthen back to normal.  She reminded us that he's still so "fresh" out of transplant and recovery takes time!  Fortunately, medically he is well ahead of the game!   Since his counts look so good we don't have to go back until this Thursday.  Next week they will do a test that will show what percent cells are Steven's old ones compared to Meredith's new ones.  The goal is getting to 100% donor (Meredith) cells by day 100.  We are not, however, counting the days until day 100--we just  appreciate every good day as it comes.

Due to Steven's immature immune system we are pretty much restricted to the house.  At first I felt like Steven would get real bored and need to get out more, however, we have come to see that just hanging out and enjoying the "lazy" days of summer are enough for him--and us!  Our family is ready for some non eventful days!  A few days ago my dad was hanging a bird feeder on one of our trees. Steven was sitting on a lawn chair just watching his Grandpa Charlie "work" when out of the blue he said "mommy--it's so nice to be out of the hospital."  We couldn't agree more! 

T+30 Thursday, July 11, 2002--It's amazing to me that a month has gone by since the day of   Steven's bone marrow transplant. We are so pleased to see Steven's counts continue to rise! Dr. Wall gave him an A+ today. His WBC count is up to 4.2--this is great!  His platelets are now over 200 which is considered normal--boy, I think this is the first time I've been able to use the word "normal" with ANY of his counts since he was first diagnosed back in January!  What a good feeling.   His fluids, liver, kidneys, and red blood cell counts are also all good. He's still not walking very well but we do think that over the last several days we've seen a little improvement.

Since Steven's Leukemia diagnosis five months ago, we have lived by these CBC blood count reports receiving them, at some points, daily.   As we've said before, they are the indicator on, at first, how extensive the Leukemia was, to next, how well the chemo was working, to now, how well Steven is doing post BMT. The varying emotions while we wait for these reports have ranged from eagerness to anxiousness to, while waiting for one past blood/bone marrow test--almost panic. Fortunately, besides the report that diagnosed Steven's Leukemia and then the ensuing PH+ Chromosome and MONO 7 cell, every report since then has held no major negative surprises. We truly thank God for that.

In our "BMT world" Dave and I have come to realize how very fortunate Steven has been.  Through this journey we have been exposed to many different families and their special children.  Everyone has their Leukemia "story".  We've learned that their is no "average" Leukemia or family situation.  Every family we've talked to has a tough story to tell.  And they can be heartwrenching.  Yet the parents we've met all seem to maintain a very positive and hopeful attitude--even in extremely tough situations. Dave and I feel that we've been able to keep our faith strong and remain so hopefull partly because Steven has, so far,  progressed so remarkably well--especially post BMT.  We've all heard the phrase "God gives us only what we can handle," yet Dave and I have wondered how we would handle what some of these other parents have had to go through.  I guess it's all perspective.  We were talking tonight about how much we really admire those parents who continue to maintain their faith and strength while enduring sometimes some really tough situations.  We have seen that Hope, faith, and attitude are so very important regardless of situation.  I like this phrase a friend told me "If you're brought to it--God will pull you