We Love Justin.com

Summer check-up

August 21, 2010

I'm happy to report that all is well with Justin.  It has now been 3 and a half years since his transplant.  We had his yearly Survivor's clinic appointment at the end of July.  I'm still waiting for the packet of results to arrive, but they did tell me that all of his blood tests came back good.  They not only check for leukemia, but for many different kinds of secondary cancers that could occur.  I believe that Justin is totally healed, so I don't particularly like them testing for all of these things and I certainly don't like them talking about it.  But they are doctors, and that's what they do.  His counts were:

WBC                  7.1             (normal is 4.5-13.5)

HGB                  14.1            (normal is 11.5-15.5)

Platelets           209,000       (normal is 150,000-450,000)

ANC                 3270            (normal is anything over 1500)

Summer is officially over here and Justin has been back in school for a week.  He's adjusting well, although it's a bit of a bummer going back to school after such a fabulous summer.  He got to go on his first cruise ( 8 days in the eastern Carribean) and out west to Yellowstone (Idaho, Wyoming and Montana).  Both trips were so different, yet both so much fun.  I love to see the world through his eyes and his experiences.  These trips are definitely memories that he will carry with him forever. 

I am really concentrating on food with Justin.  He has never been a big eater.  The only complaint from the doctors at our appointment was Justin's height and weight.  He turned 13 in May and is 4' 11  1/2" and weighed 80 pounds.  That is very small for someone his age, and that seems to concern the doctors.  Of course, I want Justin to meet his full height potential (I know that weight catches up with us all eventually), but I am not willing to consider putting him on growth hormones at this point.  He could very well just be a late grower, but the doctors are worried that the chemo and radiation may have stunted his growth.  I have been shoving the food into Justin ever since his appointment (which isn't always easy).  He has actually gained about 2 1/2 pounds in less than 4 weeks.  So I am thrilled with that.  Now I am really praying that he will grow at least 3 or 4 inches taller this year.  I've started giving him fruit and vegetable drinks everyday.  Hopefully that will help--especially since he basically eats no vegetables on his own and very little fruit. 

Justin had a great time snowboarding in February, but unfortunately he fell and broke his right wrist.  Thankfully, he is left handed.  He was so good about the cast.  It broke my heart those first 3 weeks to have him in a cast all the way up to his shoulder where he couldn't bend his arm at all.  I thought that was overkill for a broken WRIST, but the break was in the growth plate, so apparently it was necessary.  After 3 weeks he was able to go to a cast that was below his elbow.  That was way better.  

Sorry that it's been so long since the last post, but thankfully there is nothing new to report medically speaking.  I don't know how many people still actually read this blog, but I still like to update every now and then.   Thank you for caring about our Justin.

Michele

February check-up

It's hard to believe that Feb 20th will be 3 years since Justin's transplant.  We "moved" into the hospital on Feb 12, 2007 to start our 36 day stay.  I am so grateful to be where we are in 2010.  Today we saw Dr. Lew (Justin's regular oncologist) and everything looks great.  Even his temp was a perfect 98.6.  He's gained some weight and is now up to a whopping 79.36 pounds.  He is 4 feet and 10 and a half inches tall.  It's been slow going ever since he was stuck on 4 foot 8 for what seemed like an eternity.  But he is creeping up to 5 feet and the doctor is very pleased with his progress in all areas.  Today's counts are:

WBC          6.20       (normal is 4.5-13.5)

HGB          12.7       (normal is 11.5-15.5)

Platelets    205,000 (normal is 150,000-450,000)

ANC          2810       (normal is over 1500)

Justin is full of energy and really enjoys life.  He still loves skateboarding activities.  All that practice should come in handy when he goes snowboarding this weekend.  He is about halfway done with his braces and still continues to get all A's in school.  I am very, very proud of him.  He's disappointed that the Jets didn't quite make it to the Super Bowl, but next season looks very promising. 

His next appt won't be until summer--probably July.  By that time he will have become a teenager.  Such a long way from when he was first diagnosed at the age of 5.  It's certainly amazing that God has gotten us to this point.  And we are so thankful for the amazing doctors who have taken such good care of us through the years.  We are very blessed.  Life is good.  I pray that all of you who check in on us can say the same.

Michele

doctor appointment--a little early

Today was a HUGE relief.  We had an appointment with Dr. Lew, even though he wasn't technically scheduled for another month.  However, 3 weeks ago Justin came down with a fever, sore throat, etc.  All the symptoms that his friends at school seemed to have.  It seemed like he was almost better after 3 days, but then a day later the fever came back and his throat got worse.  We went to an Urgent Care on a Sunday.  My thinking was that he could get some medicine if he indeed had strep.  However, he tested negative for both strep and the flu.  The doctor at the Urgent Care suggested taking his blood counts--an idea that did not sit well with me, but we did it anyway.  Big mistake.  Those numbers were low enough to get us sent to the ER at Scottish Rite.  They did some further testing and didn't see any signs of leukemia and suggested that he probably had something viral that was messing up his counts.  However, they wanted us to follow up with Dr. Lew in 2 weeks just to make sure that his counts were rebounding.  It was a VERY long couple of weeks.  I cringed every time I saw a new bruise on Justin or heard him say that he was tired or that his legs hurt.  Today, however, Dr. Lew informed us that everything looks great!   The moral of this story is to NEVER, NEVER, NEVER, EVER, EVER take blood counts when you are sick!   I think I've learned that lesson well.  I am just so incredibly thankful right now.  It's impossible to even put it into words. 

Today's counts are:

WBC                 5.59          (normal is 4.5-13.5)

HGB                12.6           (normal is 11.5-15.5)

ANC                2880           (normal is over 1500)

Platelets         179,000       (normal is 150,000-450,000)

7th grade is going well--although Justin has a TON of homework.  It was hard to see the summer end.  He had a lot of fun at the beach and at Disney World and just plain relaxing around the house.  But it's back to a schedule now.  The "normal", busy everyday routine sounds just perfect to me.  I hope that I never take anything for granted ever again in life.  Our next appointment should be around the end of January.  Thanks for still checking in on us.  We appreciate the prayers.  This entire experience is so tough.  We know of several kids who have recently relapsed--and our prayers are certainly with those wonderful families.  Thanks again.

Michele

First Survivor Clinic Visit

We are now far enough out from treatment to have had a visit to the survivor clinic.  It was an excellent (and VERY long) appointment.  We do not have all of the results yet.  They took lots of blood, did breathing tests, EKG, Echo, chest x-ray, hand x-ray, bone density test, etc.  We basically discussed what possible future side effects might occur due to all of the chemo and radiation that Justin has received through the years.  So far, so good--from the results that we did see today.  I'm praying and believing for no side effects.  We did what we had to do to save his life, and looking at him now, you would never know that he went through any of it.  He is FULL of energy.  He finished the school year strong with straight A's once again.  He's really enjoying summer and still has a beach vacation and trip to Disney World to look forward to.  He doesn't do camps, but I did sign him up this year for a week of art classes with one of his friends.  He's an incredible artist, so I'm hoping that this will be a really fun thing for him. 

Today's counts were:

WBC          7.95       (normal is 4.5-13.5)

HGB          14.0       (normal is 11.5-15.5)

ANC          4630       (normal is higher than 1800)

Platelets   213,000   (normal is 175,000-475,000)

I'm so grateful to have nothing but good news to report.  We go back next sometime in October.  That will be with his regular oncologist, Dr. Lew.  We're supposed to go back to the Survivor Clinic every summer and see Dr. Lew once or twice in between.  This is so much more enjoyable than when we used to go 3 times a week--or worse yet when we had to stay overnight at the hospital.  Justin has received incredible treatment from the doctors and staff at both Scottish Rite and Egleston.  We will be forever grateful. 

Michele

Justin turns 12

This will just be a quick update, but I did want to write something for those of you who we don't have contact with, but who do still check the site.   Our next appt isn't until June 17th, and I didn't want to wait that long.  I know that I hate it when I am waiting for updates on other kids.  Anyway, Justin is doing great.  In fact, he turns 12 this Monday.  It's so hard to believe that he is just one year shy of being a teenager.  We've come such a long way from when he was first diagnosed at the age of 5.  I'm just so thankful to God that he is here to celebrate his 12 birthday.  And not just to celebrate it, but to be able to celebrate while totally healthy and so full of life. 

School continues to go well.  He's maintained straight A's all year.  Only 2 more weeks of school.  He will be taking final exams for the first time, so he is gearing up for that.  At least we are in the home stretch.  He continues to excel on the trumpet.  He recently had a spring concert.  The whole band sounded terrific.  The band teacher told me that I need to consider getting Justin private lessons because he is really talented.  Apparently, he can hit a lot of high notes that kids his age are rarely ever able to hit. 

Justin had his final baby tooth pulled last month.  And a week and a half ago, he got braces.  I think that they look very nice.  He chose orange and blue for the rubber band colors this first time around.  Mets colors-for those of you who aren't aware of that.  It was really hard to eat those first couple of days, but he didn't complain too much about pain.  (Ashley had a much harder time with hers).  I guess braces are minor compared to everything Justin has been through, so he probably looks at it as no big deal.  He is an incredible trooper.

I look forward to spending Mother's Day tomorrow with both of my kids.  Justin was actually born on Mother's Day, so that was an extra special gift.  Continued good health is the gift that I want this year and always.  We are very blessed.  Look for an update after next month's appt.  Happy Mother's Day to all of you moms out there. 

Michele

2 Years Post-Transplant

It was two years ago tomorrow that we checked Justin in at Eggleston hospital for our "extended stay".  We've come so far since then, it seems more like twenty years than two.   "Day Minus 8" the blog post reads.  We had 8 days of chemo and radiation ahead of us, and an even longer and trying recovery.   For a trip down that particular memory lane, read here.  Or not....

Our two month clinic visit was today, and everything is great.  Counts are as follows:

WBC            7.48  (normal is 4.5-13.5)

HGB            12.7  (normal is 11.5-15.5)

Platelets      366,000  (normal is 175,000-275,000 or higher)

ANC            3170  (normal is above 1800)

Some of these counts are higher than they've ever been.  We don't have to go back to the clinic for another 4 months - in the June timeframe.  This time we'll go to what's called the "Survivors Clinic".  Same old location, new fancy name, with lots of extra tests (more bloodwork, heart check, etc)  This is an all day event which we'll attend about once a year for the foreseeable future.  The purpose is simply to monitor the kids for any long-term effects of chemo and radiation.  (We're pulling for zero point zero long term effects)  In any case, no signs of any of that now. 

Ashley and Justin are doing very well.  School is wonderful, with both getting straight A's again last quarter.  Justin has been enjoying his trumpet, and unicycle, although not at the same time.  Ashley starts softball on Saturday, and is gearing up for high-school at Pope next year.  How time flies.

While we have been so fortunate, other friends are yet again having a very tough time.  Please pray for little Jordan Loughran, who we found out last week has relapsed.  Jordan has a slightly different type of Leukemia, and went through a BMT just a bit before Justin.  They are all troopers, and we feel that they'll once again come out on top of this terrible disease.

Thanks for checking in.  Feel free to drop in a comment to let us know how you're doing as well.

Dan

December

Well this should be fairly short because, thankfully, there isn't much to report except for a very good doctor appointment today.  Justin's counts are:

WBC            6.87  (normal is 4.5-13.5)

HGB            12.6  (normal is 11.5-15.5)

Platelets      269,000  (normal is 175,000-275,000)

ANC            3040  (normal is above 1800)

Our next appt. isn't until Feb 11th.  It sounds like we might possibly get to wait 4 months after that appt before we have to go back.   And Dr. Lew said that that might then be Justin's first visit to the "survivors clinic".  We'll still see Dr. Lew, but it sounds like every other visit will be at the "survivors clinic" which is in the same building.  It will be more of an all day affair and they will look at different things than Dr. Lew does--  a lot of it having to do with the heart, kidneys and other vital organs.  It feels so wonderful to be able to say that we are able to "graduate" to this new level.  We never made it to the "survivors clinic" before the relapse occurred.  I am just so thrilled every time we get such fabulous numbers back.  He really looks and feels great--like any other healthy kid.  He had a fabulous Thanksgiving with lots of relatives visiting.  He really enjoyed the 9 days off from school.  It was the first year that we've ever gotten the entire week of Thanksgiving off.   Now he is counting the days until Christmas vacation.   That will be 18 days off from school!

Thanks so much for checking in on us.  I was beginning to wonder if we should just stop doing updates because I really don't know how many people still check the site since Justin is doing so well.   But after my last update, I got 2 comments back from people who had read it.   So that made me think that maybe some people still are looking at it.   I know that I check a number of websites of kids that have had transplants, and most of them haven't been updated for 6 months or more now.   I assume that means that all is well, but it still would be nice to be able to read that all is well. 

I hope that all is well with your families and that you have a blessed Christmas.  I'm thankful all year long, but Christmas is the perfect time to be grateful to God for healing our son.  And for all of His many other blessings.

Michele

November

Just a quick update.   Justin hasn't had a doctor appt. since the end of September and his next one isn't until Dec. 3rd.  He's doing very well.   I'm enjoying seeing him go through the normal, everyday routines of life.  He's doing great in 6th grade.  Report cards came out a few weeks ago and he got all A's.  (So did Ashley).    We're so proud of both of them.   Justin continues to enjoy playing the trumpet with the school band.   His teacher says that he is very talented and is doing all kinds of things already that he hasn't even been taught. 

The fall weather here has been incredible.  We can still play outside most days without jackets.  Justin is really enjoying riding his new bike lately.   His old one was getting to be a little small.   His new one is a bit big, but he loves it. 

Justin had a good Halloween.   He made his own costume this year and got a compliment at pretty much every door that he went to.  He was a walking table.   He had a huge piece of cardboard with his head sticking out of the middle.   The table had a red and white checked tablecloth and a salt and pepper shaker glued to it.   He also had meatballs and spaghetti around his neck and on his hat.   (tan yarn, red felt, brown pom poms, and a plastic fork).   He even had a cup glued down on the table to collect his candy in.   We had to empty the cup into a pillow case every few houses.   It was really fun to hear almost everybody say how he wins the award for best costume of the night.   We're not quite sure yet what that award is, but apparently he wins it.

Justin had a fantastic time in October on his overnight school field trip.  He did a lot of daring things--climbing telephone polls and jumping off, walking on high wires, etc.  I am just so grateful that he is able to participate in these kinds of activities.  

We'll update after his appt in December.  I hope that you all have a fantastic Thanksgiving season.

Michele

September

I am very happy to report that things are blissfully normal around here.   Today was Justin's appointment at Scottish Rite.   The doctor was pleased with how Justin looks and his numbers were very good.   I can't even begin to explain to you the relief that washes over me whenever we get good blood counts back.   It's an incredible "high". 

WBC             6.61            (normal is 4.5-13.5)

HGB             12.2            (normal is 11.5-15.5)

Platelets       233,000       (normal is 175,000-475,000)

ANC             3150            (normal is above 1800)

We have been back in school now for almost 7 weeks.   Justin is doing really well.   I am so proud of him.   He has settled into the middle school routine nicely.   It is very different, but he's gotten used to it easily and as of right now, even has all A's.   He's extremely excited about next week because all of 6th grade is going on an overnight field trip.  They will be outside doing a lot of team building activities, rope courses, zip lines, etc.    Last year the entire 5th grade went on a 2 night field trip.   He was so disappointed to not get to go, but he was still in total isolation at that point and was being home schooled.   So I am very grateful that Justin is well enough to participate this year.   He's doing so well that I don't even feel like I have to go with him.   I'll miss him, of course, but will look forward to hearing all about his adventure.

We did start Justin's vaccinations in August.   Unfortunately, 9 days later he came down with a 103 degree fever.   I called the doctor and everyone was pretty certain that the fever was caused by the vaccinations.   Justin ended up missing 2 days of school.   We've decided to put the rest of the vaccinations on hold for now.  The pediatricians try to put pressure on you to stay on a strict schedule and come in every few weeks for more.   There is no way that Justin can afford to miss a couple of days of school every time he gets shots, though.   We're really not comfortable with completely immunizing him again anyway, so we're just going to hold off for a while.   It's not like what he got last month is going to wear off.  There are a lot of tough decisions in life.  If you talk to 10 different people, you usually get 10 different opinions on what you need to do. 

It was a nice surprise that Justin decided to join the school band this year.   So as I type this, I'm listening to him playing the trumpet.   He actually is quite good.   Granted, I don't have a musical bone in my body, but his dad played for years and thinks that Justin is good.   His music teacher says that he is doing very well, as well.   He was able to hit middle C in the middle of the music store the very first time that he attempted it.   I'm told that that doesn't happen too often.

Justin was excited that he got to go to a Braves/Mets game last week.   The Mets won--thank goodness.   It was a good game to go to, since they ended up losing both of the other games in that series.   So now he and Daddy are hoping that the Mets can pull if off this week and make it to the playoffs.   I'm rooting for them, too.  Especially since my Yankees are sadly out of it.   Oh well.   There was a time in my life when the Yankees not doing well would have bothered me immensely.  I'm still disappointed, but won't lose a minute's sleep over it.  I'm too excited that we are all healthy and well.  Our next appt. is not until December 3rd.   10 weeks--wow.   I will try hard to update once before then. 

michele

 

July

Well, it's hard to believe that we start back to school in 12 days.  I'm very thankful that Justin is healthy enough to start back at school, but it's still a tad bit depressing.   We've enjoyed the summer so much and just hate to see the fun end.

Today was Justin's appointment at Scottish Rite.

WBC          4.22       (normal is 4.5-13.5)

HGB          13.4       (normal is 11.5-15.5)

Platelets     did not report   

ANC           1710

I didn't like seeing the WBC so low, but the doctor said that everything looks great.  He explained again that counts really fluctuate and that mine would be all over the place as well if I checked them monthly.   The machine was down when it came time to check the platelets.   I would have liked to have gotten a number, of course, but Dr. Lew said that they always look at the blood under a microscope and that the technician who did that today saw lots of clumps of platelets and that everything looked perfectly fine.  In fact, the doctor said that Justin is far enough out from transplant now that he only needs to see Justin once every 2 months now.   That will be a nice break.  However, we have plenty of other doctor appts.   Justin is in the process of having several moles removed.   Transplants can cause skin problems throughout life.   He had a mole on his finger that looked odd.   The dermotologist scraped it off and tested it.   Unfortunately, it did come back "abnormal".   That does not mean malignant, but if left alone, it could turn into cancer.   So they had to go back into his finger and dig deeper.   That required about 8 stitches.   Later this week he has to have another mole scraped off and tested.   (Believe it or not, insurance companies will only pay for one procedure a day.   Therefore you have to keep coming back and get apprehensive far more times than necessary).   Justin has not enjoyed the procedures at all, but he has been a real trooper.  Hopefully this week will be the end of the dermotologist for a while.  It all depends on how that latest report comes back.

Justin did have a dentist appt last month.   No cavities, but we found out that he is missing a permanent tooth.  Not a big deal and apparently it's more common than you would think.   It may or may not be related to the transplant.   He'll have to have braces in a year or so and they will decide then whether to leave the baby tooth that he has or to pull it.   The baby tooth is a molar and is plenty big and stands a very good chance of staying in his mouth all of his life.   So we'll see.   He just lost a tooth yesterday, so he only has 2 more to lose.   Hard to believe.

Justin really has been having fun.   I hope that the school schedule won't be too shocking to our systems.   The kids have been sleeping until 9:00 a lot of days.   They've played with lots of friends and even got another trip to the beach.   This time to North Carolina to see a lot of relatives.  Hopefully there will still be time for a trip to the water park before school starts.   

Thanks for continuing to follow Justin's progress.  We may or may not update this before his next appointment in 2 months.  I'll probably try, but won't make any promises.  I'll have good intentions but I know that things get pretty crazy once school starts.   And Ashley will be starting softball the first week of school, which gets us all home several hours later than usual.   That's ok, though.  I don't ever want to complain about the normal routine of life.   I'm just so thankful for every day.   Even the more "boring" ones.   Boring can be such a blessing.   Bye for now!

Michele

   

                                           

             

Enjoying the summer

We have been out of school for almost 5 weeks now.   The summer just seems to be flying by.  Justin is very much enjoying the time off.    He's been getting together to play with some friends, doing some swimming and playing a lot of games (especially Monopoly).   Our week at the beach was a lot of fun.  Justin enjoyed the beach and pool as much as he always does.  This year we brought kites to fly.   We discovered that it's way easier to fly a kite at the beach than it is in our yard.   At the beach you can actually lie on your back as you fly the kite!   Justin found some crabs on the beach and we saw quite a lot of porpoise.  He even did some fishing from the shore and caught 4 fish!   He seemed to enjoy eating lunch out everyday.   That's become more of a pleasure since he isn't as fussy of an eater as he used to be.   He was craving crab legs everytime he thought about going to the beach, so he was happy to find that on several menus.  He and I really enjoyed the boat sale show that we happened to come across.  We got to go on and tour the 2-4 bedroom boats.  He really liked one of the cheaper ones.   It was probably my favorite, too.   It was only $291,000.  I would have bought it, but where would we keep it?????    Spending time in gift shops was probably one of the highlights of the trip for him.  He loves looking at all of the weird stuff.  I guess it makes sense that science is his favorite subject in school.   He ended up getting a shark's tooth, a puff fish that is hanging from his bedroom ceiling and a small alligator's head.   He really wanted a shark in a jar, but I put my foot down at that one.   That was really disgusting. 

Today was our monthly clinic appt.   Here are his numbers:

WBC              4.92        (normal is 4.5-14.5)

HGB             11.7         (normal is 11.5-15.5)

Platelets       207,000   (normal is 175,000-475,000)

ANC             1690        (normal is over 1500)

I figured that the numbers would drop, since last month's numbers were incredibly high.   But these numbers are all still perfectly normal.   The doctor is very pleased.  Justin has been getting a number of headaches lately and has had occasionally "gaggy" problems, but I don't believe that either of those issues have anything to do with anything that he has gone through.  I guess he is just human, and I don't know anybody who feels good all of the time.   But overall, he is really doing great.  He is riding his bike, skateboarding, and just running around in general.  We're looking forward to watching our annual fireworks next week that one of our local towns puts on each year.  That is always a special time for me.  Just knowing that my children are healthy makes any day a special time, though.

Justin's next appt will be on July 30th.   Keep enjoying the summer, and we'll try to do the same.

Michele

    

May's doctor visit

We just passed the 15 month post transplant mark.  And today we had a wonderful appointment (and Justin's final breathing treatment).  Here are the numbers that made me very happy.

WBC              10.18       (normal is 4.5-14.5)

HGB               12.2        (normal is 11.5-15.5)

ANC               6430        (normal is over 1800)

Platelets        230,000    (normal is 175,000-475,000)

What a jump in the WBC!   Wow!   That number is never that high, but Dr. Lew said all of the numbers are perfectly perfect.   I was really happy to see the HGB get a little bit more in the normal range, even though last month's number was still fine.  Justin certainly is not lacking for energy, that's for sure!   He's doing absolutely wonderful.  He did finish his soccer season last week and got his end of the year trophy.   

School ends this Friday.  Friday also happens to be Ashley's birthday.   The "giver" will be turning 13.  Amazing!   And a bit scary, as well.

Justin also celebrated his birthday this month.   He turned 11 on Mother's Day.  This was only the second time that his birthday fell on this holiday, but he was actually born on Mother's Day.   I couldn't have asked for a more perfect Mother's Day gift in 1997.   And his good health was his perfect gift to me this year.  If it wasn't for the transplant, he would still be going through chemo and his odds wouldn't be as good as they are now.  We are so grateful.   Even though the private viewing of Spiderman 3 last year on his birthday was incredibly special, it makes us even happier that he's allowed to be around people again.

We'll be going to Long Boat Key, Florida, the first of June.   We are looking forward to spending some time at the beach and seeing some of the people again that we met there 2 years ago.  Ashley and Justin both love jumping in the waves and looking for shells.   Justin likes to look for sea creatures, too.  A couple of years ago he had his picture taken with a very large fish head.   It was gross, if you ask me, but Justin was fascinated.    I'll have to let you know if he finds anything interesting this year.

Michele 

Monthly Clinic Visit

Justin had his appt. today, and all went well.   His numbers were:

WBC          5.66        (normal is 4.5-13.5)

HGB          11.3         (normal is 11.5-15.5)

Platelets    210,000   (normal is 175,000-475,000)

ANC          2980         (normal is over 1800)

Thankfully, there isn't too much to report on.   His doctor visit today was pretty routine.   He did have another breathing treatment--which is in place of Bactrim.   Only one more of those yucky tasting things to go. 

Justin has been feeling very well (except for a couple of days where he didn't eat much at all due to "gagginess").  But that situation has corrected itself and he is back to his normal self.   He enjoyed spring break very much.   He always appreciates any break from homework, but he did a lot of fun things, too.   He got to go see a Mets/Braves game.   Sadly the Mets lost, but he still had fun.   He even got a baseball signed.   He went to the zoo one day and to the GA acquarium another day.   The only not-so-fun spring break event was getting 4 teeth pulled.   All of those permanent teeth had either somewhat or completely come in already, but the baby teeth were not even loose.  So they had to come out.   The dentist was very impressed with how well he did.   At first he only wanted to pull 2 teeth and have us come back another day for the rest.   He said that Justin would be quite sore.   But the only side affect was not being able to eat much that night.   By the next day, he was pretty much back to normal.

It's hard to believe that there are only 4 weeks of school left.   Justin is looking forward to summer, of course.   He will then be an official middle school student.   Hard to believe.   I am so grateful that he was able to keep up with his classmates throughout all of his treatments.    That's quite an accomplishment, if you ask me!    His soccer team has several more games and this Friday he'll participate in Field Day at school.   I love seeing him run around.   And the smile on his face while he is doing it is just iciing on the cake.

As always, thanks for checking in on us.  We'll have another appointment sometime at the end of May.  By that time Justin will have turned 11.

Michele

 

Day 400 -- monthly clinic visit

Today was our first trip back to Scottish Rite and it was wonderful to be able to see Dr. Lew and Nurse Kim again.  They kept saying that Justin looked great.  And thankfully, all of his blood counts were in the normal range.

WBC            6.48      (normal is 4.5-13.5)

HGB            11.9      (normal is 11.5-15.5)

ANC            3050      (normal is above 1800)

Platelets     293,000  (normal is 175,000-475,000)

He had to do another breathing treatment today, which takes the place of bactrim.   We had been told that last month was his last treatment, but apparently they decided to go ahead and do 3 more months worth.   Disappointing, since it's not at all enjoyable for him.   But if that's the worst of our problems, then I'd say that we are doing very well.

Justin basically has been doing great, although he had a few minor issues this month.   He had a rash break out overnight all over his chest and back.   Then it started moving to his upper legs.   It looked exactly like the rash he got when he had the GVHD, so we were a little worried.   I called the hospital, though, and they were not concerned.   They said to just keep an eye on it.   Sure enough, it went away 5 or 6 days later, almost as suddenly as it came.   Very odd.   We don't know what it was.   BMT kids often just have sensitive skin, so it's possible that this sort of thing might just happen from time to time.

Justin had to miss a few days of school last week.  He got a fever that lasted for about 4 days.   He also got some cold symptoms and the cough is still lingering.  He never felt totally awful, but he definitely was not himself.   It was a little scary for us because this really was the first time that he has been sick since the transplant.  I've become sensitive to his complaints (being tired, sore legs, etc), whereas if I were experiencing them, I wouldn't think twice about it.   I know that he is healed, but it's still a struggle for me to get to the place where I think of him as any other normal child.  It sure does help when we get good blood numbers back each month, though. 

Justin had to miss his first 2 soccer games because of his fever/cough.  Hopefully he can play this Saturday.  He enjoys being with his friends.   That's still a treat for me to see, after such a long isolation period.   School is going great.   He got his report card last week.   All A's.  We are definitely very proud.  Ashley got all A's, too.   Good thing that she shared her marrow!   Come to think of it--both kids blood type is A+.  Maybe that has something to do with it????

Thanks for checking in .   It's always a pleasure to be able to give a good report.  I have to call tomorrow to schedule his next appointment, but it should be in about a month.  Bye for now.

Michele

   

Our Georgia Southern Bat Boy

"Do you think Justin would like to be the bat boy on my son's college team for a game?"

That's what Joe Moye, my employer, boss, and good friend of eight years asked me last March as Justin recovered from his BMT.  "Boy, would he," I told him.  Unfortunately, in 2007, this was just not meant to be.  During the entire season Justin was barely allowed outside of the house, let alone to a ball park.  It was obvious we had to wait a while to put this plan in effect, so wait we did -  until last night that is.  And the wait was well worth it.

Joe's son, Andy, is a sophomore at Georgia Southern University. Picked in the 11th round of the 2006 MLB draft by (drum roll) EVERYONE'S FAVORITE NEW YORK METS, Andy faced a tough decision.  Should he enter the ranks of professional baseball immediately, or turn down the offer and go the college route?  With maturity on his side, Andy chose to spend the next four years developing his pitching talents *and* receiving an education.  His freshmen year was spent recovering from Tommy John surgery, so this year, 2008, was Andy's year to make his mark.  And he's begun to do just that.  His very first collegiate start last Sunday delivered 4 strikeouts and an impressive 18-6 win over Boston College.

Justin was equally as impressive last night in his first bat boy start against Georgia Tech.  Few could accuse him of shyness on this memorable evening as he jumped right out there and met the guys, played some catch, and did his job admirably.  It was a pretty spectacular and heart warming sight given the situation we were in just one year ago.  See photos here.

Many thanks to Joe and Andy Moye, Coach Hennon, and the entire Georgia Southern team.  To them, it may not seem like they did very much.  But to us, it will forever stand out as an unforgettable evening in a life where nothing is taken for granted. You've succeeded in turning these NY junkies into a couple of lifetime Georgia Southern fans.  We can't thank you enough.

As for Andy - we look forward to seeing him pitch up a storm this season.  We also hope he eventually winds up with everyone's favorite team, the New York Mets.  Either way, we'll be pulling for him.

Dan Peterson

One Year Post Transplant!!!!

Well, it's hard to believe, but today is exactly one year since Justin's transplant.  So many thoughts are running through my head.  There have been many hard days this past year, but I thank God every day that we are on the other side of that now and that Justin feels like any other healthy 10 year old boy.  Looking at him today, nobody would have a clue as to what he has gone through.   Nor would they know what an incredible trooper he has been.  Today was Justin's monthly check-up.   They drew some extra blood to run the one year tests and Justin also had his last breathing treatment and had an EKG.   We don't know those results yet.   They like to keep an eye on vital organs to make sure that the chemo hasn't done any permanent damage.   The whole hospital visit felt kind of surreal to me.   I knew that this would be our last visit to Egleston Hospital for a while.   After today, Justin was going to be released back to his regular oncologist at Scottish Rite.  However, I thought that I had been told that we would be coming back to Egleston every year so that the transplant doctors could give him a check-up and follow his progress.   But today I was informed that we are done at Egleston.   It was such an odd feeling.   On the one hand, I'm so thrilled and thankful that we no longer need the services of the transplant doctors.   But it's just so strange to say "good-bye" to everyone there.   How could we permanently say "good-bye" to the people that very possibly saved our son's life??   We went around looking at everything for the last time.   I felt very sentimental.  Justin said farewell to the gift shop and we went to the wing of the hospital that we called home for 36 straight days last year.   Justin wanted to see who was in his room.   We walked the circle around the nurses station that was part of Justin's daily chores last year.   We both commented on how much faster he is at it this year!!   We saw a number of bald children playing in the playroom.   Memories came rushing back.  I couldn't help but pray that one day soon, they will be where we are today. 

The doctor thought that Justin looked great.  We hadn't seen this doctor in a long time.   She said to Justin, "It's a good thing that you brought your mom today or I might not have known who you were".   She was used to seeing him bald, swollen and with a rash from head to toe.  Now when we go back to Scottish Rite, Dr. Lew and nurse Kim may not recognize him.   They've known him for years as a blond, but that's no longer the case.  Anyway, Justin's counts today were good.

WBC         4.66      (normal is 4.5-13.5)

HGB         13.0       (normal is 11.5-15.5)

ANC         2340      (normal is above 1800)

Platelets  240,000  (normal is 175,000-475,000)

The WBC is exactly the same as last month.   I'd call that holding steady.   The hemoglobin went up some and the platelets went up quite a bit.   I was very happy to see that.   Whenever we get good numbers back, I find it much easier to breath!    

Justin is full of energy these days and is enjoying life.  He got back quickly into the school routine and most all of the papers that I see coming home are A's.   He's really enjoying being back with his friends and feeling "normal".  I am so grateful that he has not gotten any sicknesses from school.   There has been so much strep and flu going around.   Apparently it's a very bad year for flu.   Today the doctor said that the flu shot just didn't work this year and that even the doctors and nurses who have had the vaccine are falling down left and right.   I guess Justin's immune system is working pretty nicely, even though it still isn't back to normal.  In the next month or so, Justin will have to start getting his immunizations all over again, since the radiation and transplant wiped out everything that he had ever gotten.  Oh well.   It won't be fun doing all of that again, but he was used to a daily shot for years, so it probably won't seem like too big of a deal to him.   

The kids came downstairs today to find some special balloons waiting for them.  I've got to acknowledge the "giver" too, of course.   Without Ashley and her marrow, none of this would have been possible.  During breakfast I made the comment to her that one year ago today she wasn't allowed to eat breakfast since she was about to have surgery.  I'm sure that she was much less nervous today!   I made the kids' favorite pie that we will eat tonight.  Not a big celebration.   Just a time to be together and reflect upon all that we have to be thankful for.

Thank you for all of your prayers throughout this entire process.   We will still update the website--especially after Justin's appointments.   Even though an entire year has passed, he will still be monitored closely.  Thanks again for all of the love and support.

Michele

Back to school!

Hello All!

Justin's been back in school for a couple of weeks now.  Can you believe it?  I'm still so thankful, and have yet to take this simple fact for granted.  I think I may never will.   

He had a clinic appointment today as well, and everything looks good.  Here are the counts:

WBC          4.66        (normal is 4.5-13.5)

HGB         12.7         (normal is 11.5-15.5)

ANC         3070         (normal is above 1800)

Platelets   185,000    (normal is 175,000-475,000)

Everything normal! 

At one point, the doctor asked Justin if he got tired during the day at school.

"Yes," Justin said.

"When do you get tired?" asked the doctor.

"During math," he replied.

"Well, I can't help you with that."

*Pre-tty* funny, if you ask me.

More good news.  Little kyle at www.kylessmile.org seems to be doing very well.  A lot of prayers were said about that little boy.

Thanks much-

Dan

Clinic visit-Day 311

Justin had his clinic appt. this morning.   His counts were:

WBC          4.97        (normal is 4.5-13.5)

HGB         11.9         (normal is 11.5-15.5)

ANC         3010         (normal is above 1800)

Platelets   200,000    (normal is 175,000-475,000)

I was really happy to see the WBC go up.  That's the number that has been cooperating the least during the past several months.  I guess the platelets will continue to bounce around.   At least they are bouncing in the normal range, so all is well.  Justin also did his breathing treatment today, which is instead of taking those Bactrim pills which may possibly have been contributing to his low counts.  This was his first time doing the breathing treatment.   It only took about 15 minutes, but he did not particularly enjoy it.   He said that the air tasted very bitter, so he drank a lot of water right afterwards.  He probably will only have to do this a few more times.  Last week the doctor indicated that it would be monthly until around June.  But today's doctor thought that another month or two should be enough.   We probably only have 2 more visits to Egleston.   They want to continue to monitor Justin through the 1 year post transplant mark.  (That wonderful anniversary will be Feb 20th).   I think that they will run a few extra tests at that time, and then we will be heading back over to Dr. Lew at Scottish Rite.  That will be an incredible milestone.   At this point, Justin has no signs of chronic graft vs. host disease.  Today the doctor ran through a long list of symptoms to watch out for, because the chronic form of graph vs. host presents itself differently than what Justin has had in the past.   Now is the time to really watch for it because he is off all of his anti-suppressant medicine!!!!   He had his last pill on Christmas morning!   So now hopefully his immune system will really take off in the right direction.   It will still be a year or two until his system is completely normal, but he is now operating completely on his own and getting stronger and stronger everyday.   I still find it miraculous that he really hasn't gotten sick at all since the transplant.  Just a slightly stuffed up nose and scratchy throat for one day.   And that didn't stop him from being totally active. 

Justin and Ashley both had a very fun Christmas and got more than enough goodies.  Their favorite is probably their new Wii.  A close second for Justin would most likely be his skateboard rail that he is going to build with Daddy this weekend.   Justin is really enjoying skateboarding these days and it's so good to see him so active.

Justin will be heading back to the real classroom on Jan. 7th.  Hopefully that will be a smooth transition since he'll be coming back from Christmas break at the same time as all of the other kids.  He's been away from a normal routine for so long, that he actually is somewhat looking forward to going back to school.  We'll see how long that lasts.   I know that he'll be happy to get to be with all of his friends again. 

His next appt. is Jan 25th.  It will be a treat to get to go 4 weeks in between appts.   It was also a treat that I didn't make him wear a mask into the hospital today.  Now that he is off of all of the medicine, I think that he is permanently done with the masks.  That's something that he will not miss!   Thank you all for the prayers.  It's been a trying year in a lot of ways, but I feel so incredibly blessed.  I hope that you've enjoyed the Christmas season and will have a very blessed new year.

Michele

   

Kyle

Hello family and friends-

I would like you to consider giving one more gift this Christmas season.   I've followed and communicated with several families through the years as part of everything we've gone through.  A recent addition to this list is the family of a little boy named Kyle.  Kyle has had a very tough time.  He relapsed after treatment, and then again after BMT.  Right now, I'm afraid,  he is not doing well.   On top of this, his parents have been pretty set back financially.  His dad has continued to work, which requires him to be a plane ride away from his son.  I can't imagine going through everything they have, while at the same time worrying about financial troubles.  Kyle's aunt has set up a financial aid fund to help with all of this. The website for this and general status info is http://www.kylessmile.org/index.html 

There are numerous status updates in the forum section, much like what you're reading now.  Please take a look, and if you feel led you can donate to the fund through Paypal or a check.  Every little bit helps, I'm sure.  I've checked into it, and it's completely legitimate. 

Justin is doing so well.  He's almost off of all of his immuno-suppressant medication.  He's looking forward to Christmas.  He's starting school after Christmas break after over a year of being out, and is even looking forward to that!  We can't ask for more.  Last year at this time he nearly didn't make it out of the hospital for Christmas.  He could barely walk on his own.   He felt poorly almost all of the time, and had a long way to go.  We have come so far, and have so much to be thankful for.  Please consider showing your thanks by helping out a family who is not so fortunate.

Thanks much, and Merry Christmas-

Dan

Wonderful News

This morning's clinic visit brought some really great news.

WBC            4.01  (normal is 4.5-13.5)

HGB            12.1   (normal is 11.5- 15.5)

ANC            2350 (normal is above 1800)

Platelets     271,000 (normal is 175,000-475,000)

All of the counts are up, and everything is in the normal range except for the WBC, and it's pretty close.  The doctors think the low counts were caused by the Bactrim medication.  I can't even begin to explain what a relief this was.  As you know, I'm usually not very candid in these posts for good reason.  Right now it's sufficient to say that the last two weeks were extremely difficult.  But all of this changed this morning, and I couldn't be more thankful.  I feel like I should be handing out cigars or something.

They won't be putting Justin on the Bactrim again.  The low counts weren't horrible per say, but way too stressful for us to have to deal with on a regular basis.  So instead of the Bactrim, Justin will receive another medicine that he'll have to inhale once a month in the clinic for about fifteen minutes.  The entire reason for this is to prevent an opportunistic infection called Pneumocystic Pneumonia.  He's continuing to taper his final anti-rejection drug, and by the time I post next month should be close to off of it completely.  He's really doing well, and looking forward to Christmas.

Once again, we thank you all for your prayers and support. And most of all we thank God for watching over us these last few weeks.  As we celebrate this wonderful news, I can't help thinking about a family that is not so happy today.  Please remember the Spina family who lost their little girl Gabby unexpectedly last week to a brain hemorrhage.  Gabby Spina was in the 6th grade at Ashley and Justin's school.  Please pray for their peace.

Take Care, appreciate the ones you love, and have a great Christmas.

Dan

11/28 Clinic visit

Justin had another clinic appointment this morning.  The counts were about the same as last time, slightly lower.  The doctor feels this may be due to a medication he's on called Bactrim, so they've stopped it temporarily and will check the WBC again in two weeks.   He said there are lots of reasons for counts to be off after BMT.  He also said that it's a good sign that they've remained pretty steady for such a long period of time (1.5 months or so)  Here are the counts:

WBC            2.68  (normal is 4.5-13.5)

HGB            11.3   (normal is 11.5- 15.5)

ANC            1710 (normal is above 1800)

Platelets     198,000 (normal is 175,000-475,000)

Justin's not had much of an appetite lately.  He's a little gaggy, and may even be developing a slight cold.  Overall though, he feels great and is certainly acting his usual silly self.  There is no sign of GVHD at all.  He's completely off of steroids now, and today has started to taper his last anti-rejection drug called Cyclosporin.

Thanks much,

Dan

Counts Rechecked

Justin's counts were checked again today and all is well.

WBC            3.02  (normal is 4.5-13.5)

HGB            11.9   (normal is 11.5- 15.5)

ANC            2060   (normal is above 1800)

Platelets     251,000 (normal is 175,000-475,000)

Everything was up.  The lower numbers last week could have been due to the steroid taper, or even a virus of some kind.  He's still on two steroid pills a day, and will soon go down to one.  This puts him closer and closer to coming off all antirejection medication, and on track for going back to school in January. 

I didn't go into a lot of detail in my post last week, and, well, I'm not going to in this post either.  But I did want to let you know that today was a really great day for all of us.  This is such a stressful, god-awful disease we're dealing with, and Justin (and Ashley) keep kicking it's butt on a daily basis.  Thanks for your prayers and support.

Dan

New Pictures

I've posted some photos.  Halloween this year, the skate park, and Ashley playing softball. 

Enjoy.

Dan

RSS Feeds

I've enabled RSS feeds on Justin's site.  Most of you are probably asking...right about now...what does this mean...exactly?   It does not mean, Roaringly Super Site, nor does it mean Really Satisfying Salutations, nor, Ravenously Supercilious Soup.  But it is a cool way for you to keep up to date with the site, automatically informed when a post has been published.  To do this you'll need to have an RSS reader, which most portal home pages like Google or Yahoo have already incorporated.  Click here to add Justin's page to your reader, and then choose the reader you want to use.  If you don't use a standard reader, clicking on one of them will allow you to set it up.  I recommend Google or Yahoo.  Or if you're an AOL junkie, by all means, have at it.  I'm not going to stop you.

If this is just all too confusing for you, then don't worry about it, don't do anything at all.  In a while I'll be setting up another link that you can use to have emails automatically sent whenever the site is updated.

All for now.  Check back Monday. (or use your new RSS reader)

Dan

Clinic Visit

Justin had a clinic appointment today.  He continues to do well, and will be dropping down again on the steroids this week.  This is great news, because last week he was feeling a little ill, and it seemed he might be close to going up a bit on his dose, but all turned out for the best.  Even though he's doesn't have the best appetite, this is likely due to steroid withdrawal, and the doctors say he may even feel worse before he feels better. 

Today's counts were:

WBC            2.77  (normal is 4.5-13.5)

HGB            11.6   (normal is 11.5- 15.5)

ANC            1720   (normal is above 1800)

Platelets     239,000 (normal is 175,000-475,000)

You may notice that the WBC and ANC dropped quite a bit.  This is probably because of coming down from the steroids.  Steroids can artificially inflate white cell counts, so dropping the dose can make this number go down.  Just to be safe, they're going to do a another count on Monday.  The HGB just dropped a little bit, and the platelets actually went up some.  So things are all good.

Tonight is Halloween, and Justin will be going out as a motocross racer.  Ashley will be an old person.  To those grandparents wanting to know "how old?", the answer is, a lot older than you.  I'll post some pictures later this week.

Thanks much-

Dan

A Year Ago

A year ago marked a dismal day in many of our lives.  It happened to be the 13th, and a Friday, a fact that did not go unnoticed at the time,  although not really out of superstition.  Friday the 13th has little meaning to me, except in this particular case where it served to etch in my mind a permanent calendar entry.  I don’t normally remember specific dates, but this one I’ll probably never forget.

The event was a phone call from Justin’s doctor, who didn’t have very good news to share.  The call was not a surprise.  About three weeks prior there were ominous signs in the form of low blood counts collected during a routine visit.  This was kept a secret from even the closest of family and friends.  There was no need at that point to raise alarm.  The low counts could have been from any number of reasons – a virus brewing or a bacterial infection of some sort.  And oh did I have hope for one of the latter.  You always find hope, or at least should find hope when there is some hope to be found.  It had to be something other than relapse.  This had to be the case because I couldn’t imagine sitting this little boy down and telling him, that in fact, he’s not done with treatment.  “That ginormous balloon they gave you last January, and the clapping and cheering as you left he clinic for your last treatment?  Well, I’m sorry buddy but it didn’t really count.”   

I was traveling at the time, and thoughts like that last one made me scream out loud in my hotel room.  “Please do not make him go through this again.” 

But it was not a virus.  He did have to go through it again, and he did, of course, have to be told.  As I look back on all of the treatments, and the sickness, and the challenges of the BMT I realize that none of it was a picnic.  But breaking this news a year ago - this was the hardest part of all - at least it was for me. 

I’ll never forget the look on his face.  It seemed like he was about to cry.  Then he just kind of shook his head a little and looked straight up.  “Am I going to get another balloon when I’m done?” he asked.  You can read a whole lot of things into that one little question, and on most of them you’d probably be correct.

So here we are – one year later.  A year of more displays of courage than should ever be expected of a nine year-old boy .  It was an awful, terrifying, and wonderful year.  A year ago I couldn’t envision, or rather, tried hard not to envision where we’d be right now.  There were so many possibilities.  One day at a time - that’s what they say, and it’s good advice when you can follow it.   

A year ago I didn’t know that Ashley would be such a hero in all of this.  With only one sibling, chances of a match were pretty low.  In the course of the one-day-at-a-time struggle,  news of Ashley’s match on November 16th was a definite high-point.  And watching Ashley as she stepped up to her biggest responsibility so far in life was an inspiration.  Had it not been for her, Justin would only be halfway through a two-year treatment plan right now.  And that annoying GVHD we keep writing about – chances are it’s a big part of what’s keeping the substantially more annoying leukemia away for good.  Go Ashley, go. 

A year ago I wouldn’t have known the details of the trying moments, of which there were many.  I used to think of Justin’s first three years of treatment back in 2002 as “the big trial” and “the major life lesson”.  I couldn’t have been more wrong.  That initial treatment was a breeze when compared to relapse.  Experiences like this past year make you sit up and realize what’s important in life.   Perhaps the Mets now-famous choke last month really wasn’t such a big deal after all.  Maybe it’s ok if Rutgers loses a few games,  and maybe a season of rebuilding will be good for the Jets.  Yes - my teams are in the toilet, but I am riding high.  Not a bad attitude for a New York fan to have in any year.

So I hope I didn’t plunge you into despondency, because my intent is quite the opposite.  It’s hard to illustrate how far we’ve come unless we take a look at where we’ve been.  Justin’s in amazing condition, and is enjoying life without hospital stays.  A year ago, could any of us imagine Justin playing soccer this fall?  Or riding ramps at the skate park on his new board?  I know I couldn’t, but in the last two days alone he’s done both.  That’s a lot to be thankful for. 

As always, thanks for checking in.

Dan

Day 225

Justin had a clinic appointment today.  The Children's Hospital has gone through some major renovations, and this was the first time in the new digs.  There's also a new parking deck which opened a couple of months ago.  I had high hopes for this new deck because of the extreme lack of space in the old.  My hopes were dashed this morning as I circled for a good 45 minutes before finding a space.  So much for improvement.  Seriously though, I have few complaints overall as they're taking very good care of Justin, which trumps parking space any day.

Justin's counts were great today.  They're about the same as last time, and probably similar to counts that you or I would produce at any given moment:

WBC            5.02  (normal is 4.5-13.5)

HGB            13.1   (normal is 11.5- 15.5)

ANC            3780   (normal is above 1800)

Platelets     234,000 (normal is 175,000-475,000)

I asked about the school situation.  For those that don't know, Justin has been home schooled for about a year now, following the same curriculum as the rest of the class.  He's been very active, and is even playing soccer, but the doctors have felt that being in the confined space of the classroom with other potentially virulent children is a bit too much of a risk at this point.  Today the doctor said that they'd like Justin to continue to stay out of school until early January.  This was simply a "recommendation", and understandable.  Truth be told, another doctor or two may have gave us a wink and said to move forward cautiously.  So, the bottom line is that it's still a tough decision.  Most likely Justin will be kept out of school full-time until January, with the possibility that he can go to class one or two days a week before then.  We'll just have to see.  So far he's had nary a cold since the BMT, which of course edges us towards the side of school.  Life is for the living, after all.  We know that full well.

He's still on the immuno-suppressive steroids, but on a very low dose.  Things are looking good in this area, so he'll begin to taper again, hopefully bottoming out next month.  After that, it's time to start nixing the curly hair wonder-drug Cyclosporin.

As for the wonder-donor, Ashley, she's doing great as well.  She's finishing up her softball season tomorrow.  Yesterday she went 1 for 1, with 2 walks, and made some outstanding defensive plays at second base.  She really loves it, and may be playing in a private league in the spring.

Well, that's all for now, kids.  Thanks for checking in.

Dan

Day 216

Justin continues to feel good.   However, he has been showing a few signs that the GVHD might be trying to return.  We were supposed to go down to 5 mg of the steroids today.  However, I was not comfortable with that since he is having a few problems now.  If it truly is the GVHD, then going down on the medicine will just make matters worse.  I called the hospital to leave a message and was surprised when the doctor himself actually called back to discuss things with me.   He agreed that it is best to keep Justin on the same dose that he's been on for a while and see what happens.  If things get worse, then we will have to actually increase the steroids.   Our next clinic appt is next Wednesday, Oct 3rd, so we'll see what they suggest then.   I just know that I will not allow it to get out of control again like it did last time, when we didn't know why he felt so bad.   

Justin made it to his first soccer practice last Thursday.  He really enjoyed that and the weather could not have been more beautiful.  Saturday was the first game.  Unfortunately, his team lost.   But he did have fun and got to play both offense and defense.  It was hotter out than I would have liked, but Justin seemed to have plenty of energy running around.   It was so good to see him around other people.   Although, I did have the hand sanitizer out to use on him whenever he came out of the game!

School work is still going well.  As I type this, he is in the other room finishing up a book for a report that he has to do.  Oh- a little update-- he got a 100 on the Mars 3-D project.  I think that he is keeping up with his classmates very nicely.  He's a pretty smart little guy.  And he truly is doing pretty well overall.  These issues that he is having are just a bit annoying.   They really aren't interfering with the quality of his life.  So we are grateful for that.   I guess it will just take a little longer than we had hoped to get off of the immune suppressant drugs.    

Until next week...

Michele

 

Day 208

This will be pretty short since there isn't very much to report.  But that's a good thing.  Justin is feeling well, but he was disappointed that his first chance to go to soccer practice was cancelled because of rain.  I felt badly about it, but another week for his immune system to get stronger is not a bad thing.  He has been very active outside this weekend.   We spent hours and hours in the yard because suddenly it feels very much like fall.  We are keeping up with all of Justin's school work.  He even just finished his 3-D science project of Mars (with a little bit of help from Daddy).  I can handle all of the regular school work, but anything remotely related to art is not my thing.   Thankfully, Justin is very creative and is quite talented in the art department.   So he actually finds these projects to be fun.  We are at 7 mg of the steroid right now.   We should be going to 5 mg in a week.   Please pray that we can totally wean him off this time.  It gets harder as the dosage gets lower.   It seems like he isn't eating nearly as much breakfast lately, but he eats enough lunch and dinner and will have one snack right before bed.  So he is maintaining his weight just fine.  Steroids make you super hungry, so it makes sense that you are not as hungry as you are coming off of them.  Our next appt is not until Oct. 3rd, but I'll update once before then.  Have a great week.

Michele 

Day 197

It's hard to believe how close to Day 200 we are.  Justin's appointment was this morning.  His numbers were once again pretty much unchanged.

WBC            5.15  (normal is 4.5-13.5)

HGB            13.3   (normal is 11.5- 15.5)

ANC            4070   (normal is above 1800)

Platelets     231,000 (normal is 175,000-475,000)

As usual, I was greedy and wanted to see even higher numbers.   But these numbers are all excellent.  The doctor declared him to be "stable".   In fact, they don't want to see us again for 4 weeks--as long as everything continues to go smoothly.  His weight is up more than half a pound and his blood pressure was very good.  Justin is on 9 mg of the steroid right now and will go down to 7 mg on Monday.  He is eating well and feeling great.  He's been playing a lot of basketball in the driveway and still rides the "Wave".  We've been throwing the football in the yard lately and also playing catch with a baseball.  It's so wonderful to see him happy and full of energy. 

We've signed Justin up to play soccer!   It's just a 7 week low-key league.  He's done this at school since he was in kindergarten and really enjoys playing.  It took a little convincing to get the OK from the doctor.  But I think that it will be good for him.  He will be around plenty of kids, but it is outside where hopefully it will be safer from germs.  It should be a good test for his immune system (getting him prepared for school) and also will be a morale boost.   Hopefully he will feel a bit more "normal". 

The baseball season is winding down.  Justin has become much more of a fan this year and it is fun to watch the games with him and to answer his questions as he figures out the ins and outs of the game. I've been a huge Yankees fan all of my life, but Justin has decided to be a Mets fan.   I guess it's not that strange since Dan is a Mets fan.  So things could get pretty interesting in the coming month.   Maybe they'll even be another Subway series this year.   Although, I'd hate to have to root against my little buddy's team.   But I'd do it!

We'll let you know how Justin's first soccer game on Sept. 22 goes.  And I'll try to update once before that, as well.

Thanks for caring about our special little guy.

Michele 

 

Day 189

Justin did not end up getting whatever it is that Ashley had last week, thank goodness.   I'm really thinking that her problems were nothing contagious, but were rather the result of that antibiotic that she was on for the ear infection.  She ended up missing 3 1/2 days of school, but really didn't feel well for longer than that.  I think that it lingered far too long to be a viral infection.  She's pretty much back to normal now.   She played in her softball team's first game of the season yesterday.  They won and Ashley had a great catch!   Justin brought his "Wave" in the car so that he could ride it in the parking lot during the game.   But he lucked out and hit the jackpot instead.   There was an actual skate park right next to the parking lot.   With ramps and everything!  Obviously, he had a blast!   Ashley has 3 more games at this same location, so I'm quite certain that the "Wave" will be accompanying us each time.  School work is going well.   Justin and I have settled into a nice, daily routine.  He's cooperating well and is learning quickly.   I don't think that he'll have any problems when it is time to go back to school--probably around early November.  There is no clinic appointment this week, but yesterday we dropped Justin's steroid dose from 11 mg to 9 mg.  So far, so good.  If all goes well, he should be off of the steroids in about 9 weeks.   Then we have to wait about 4-6 weeks before we can start weaning him off of the other immune suppressant.  That wean will probably take a couple of months.  Justin's next appt. is next Wednesday--a week from tomorrow.   We'll have new numbers to report then.  Thank you for still checking on us.

Michele

Day 181

Today is exactly 6 months since Justin's transplant!  Although life is certainly not normal, it is so wonderful to be on this end of it, and not where we were back in February.  He did have an appointment today.  His numbers were:

WBC           5.22    (normal is 4.5-13.5)

HGB          13.1     (normal is 11.5 to 15.5)

ANC          4490     (normal is above 1800)

Platelets   237,000 (normal is 175,000-475,000)

Although I have faith that Justin is totally healed, it is still a relief to see good numbers.   Today's numbers were pretty much exactly like the last time they were checked.  Platelets and WBC were down  so slightly that it's really not even worth mentioning.  The reduction in steroids last week could very well be the reason for the small dip in WBC.  Still being in the 5's is very good, though.  I love the fact that his hemoglobin went up.  That's a really good sign and is the highest that that number has been post-transplant.

Justin continues to eat well, so he gained a pound or so.   Blood pressure is still good.  We are scheduled to go down on the steroids again next Monday.   Justin's next appt is not until Wednesday, September 5th.  I've started working with him on his school work, so I guess you can say that he is an official 5th grader now.  He's very active and plays hard outside and still enjoys riding his "Wave".

Unfortunately, Ashley was not able to go to school today.  She was not feeling well for most of the weekend and did not get off of the couch much today either.   I'm hoping that her issues are because of an antibiotic that she was on for an ear infection.  The doctor told us to stop the antibiotic and see what happens.  I really hope that whatever it is isn't contagious.  If it is, then I guess it will test Justin's immune system.  I know that he has to be exposed to germs sometime, but I don't particularly like it.  He feels really good right now, though, and we are immensely grateful.

Until next time...

Michele   

Day 174

Hi.This is Justin.We did not have an appointment today but I wanted everyone to know that I am feeling good. I am having lots of fun , especially with my ''Wave'', and I'm getting really good at it. Poor Ashley is back in school now, but soon I'll be doing school work again, too. Today I'm going down to 11 mg of steroids.Things are going fine and I'm still eating well.  We have our next appointment next Monday, August 20.   My mom or dad will tell you how it went.  Thank you for praying for me.

Justin

Day 167

Justin had a terrific clinic visit today.  All of the counts are up! 

WBC             5.58 (Normal is 4.5-13.5)

HGB           12.7   (Normal is 11.5-15.5)

ANC          4430    (Normal is 1800 to about 8000)

Platelets      242,000 (Normal is 175,000-475,000)

I think that the jump in WBC from 4.78 to 5.58 in two weeks time is particularly good, because during this time Justin's steroid dose was actually tapered down a bit.

Things are really working out quite well.  The doctors and nurses continue to comment on how good he looks.  He's very active, and really enjoys riding his "Wave", a skateboard type thing he just recently acquired.  I personally think the most amazing thing is that through all of this he hasn't had the slightest illness, not even a cold.  He has had his GVHD issues to deal with, of course, but no infections whatsoever.  Pretty good for a weakened immune system.  Perhaps Ashley's immune system isn't so weak inside of him after all!

Speaking of Ashley, she's doing very well also.  She starts school a week from today, and of course, will be playing softball again for the Paladins.  She should have even more playing time this year, given that she's a big seventh-grader and all.

Thanks for checking in.

Dan

Day 160

There was no appointment this week but today we do go down from 15 to 13 mg a day of the steroids.  I'm really hoping to successfully wean Justin off of these drugs.   Thankfully, the past week has been a good one.   That means that the 15mg was controlling the GVHD.   There was only one day this past week where Justin felt a little "gaggy".   Nothing serious, but he didn't eat much breakfast that morning and wasn't able to finish his cookies that night.  Although he seemed to feel fine for the rest of the day and everyday since.   So I'm just chalking those incidents up to reflux.  That would happen to him occasionally even before any of this.  I guess we can't blame the transplant for everything.  Justin had a friend over last week and this friend brought his "Wave"--a skateboard type thing.   Only way cooler (according to the boys) than a skateboard because there is so much more that you can do with it.   It simulates surfing and snowboarding.   It will take a lot of practice, but Justin was getting better at it.  He was having so much fun on it that I decided to order one for him.   He keeps asking me what day I think that it will get here.  It's such a pleasure to see him full of energy and doing normal boy activities.  I can't believe that school starts 2 weeks from today.  Well, that will be Ashley's first day anyway.  I will be doing Justin's schoolwork with him at home.   Neither one of us is particularly looking forward to that, but he's got to be ready to join the other 5th graders-- hopefully around October or November.  Our next clinic appointment is a week from today--Monday, August 6th.  Hopefully there will be no need to update before then.  Please pray for no bad side affects now that we are down to the 13 mg.   Thank you!

MIchele

Day 153

Today's numbers were:

WBC             4.78 (Normal is 4.5-13.5)

HGB             11.8 (Normal is 11.5-15.5)

ANC             3800 (Normal is 1800 to about 8000)

Platelets      240,000 (Normal is 175,000-475,000)

These numbers were all very nice to see.  The platelets continue to rise nicely.  Hemoglobin is holding steady.   The white blood cells came down some, but I figured that they would since they had really taken a big jump last time.   Today's white blood count is still excellent.   And his kidney number is down even more to 0.6.   So that's fantastic.  Obviously, the cyclosporine is what was making that number too high in the past.   So we are going to stay on the low dose that we've been on for weeks now.

Going to Justin's appt today was almost like going to a new hospital.  There was a brand new underground parking deck.   So that made for more of an adventure than usual.   The deck took us in a totally new entrance.   We felt like we were back at Scottish Rite Children's Hospital.   They are re-doing Egleston to look very much like Scottish Rite.   (We saw Scottish Rite get it's new look a couple of years ago).  We are so fortunate to live so close to both of these wonderful hospitals.  Today Ashley and Justin both wore their Heelys (sneakers with wheels in them), and we took a detour in the hospital so that they could "skate" down the tunnel.  They both found that to be fun--and afterall, we were already at the hospital in case any injuries occurred.  But they didn't.  It did my heart good to watch Justin Heely-ing down the sloped tunnel.  That was one of his goals for when he was feeling better.   Previously he had only used the tunnel to go from his hospital bed to his radiation treatments-- usually in a wheelchair because he was feeling so badly.  So seeing him today put a smile on my face.

Back to the appointment.  Justin's blood pressure was good.   His weight came up a couple of pounds.   That was good to see.  He has been eating very well and I am happy to report that he has not had that "gaggy" feeling in 2 weeks.  So it is clear that the steroids are nicely controlling the GVHD.  I'm glad about that- especially since we did go down from 20 mg to 15 mg a week ago.   If no side affects occur, Justin will go down to 13 mg of steroids next Monday. 

I keep forgetting to mention Justin's hair.  He's got a full head of it now.  It's definitely brown, not blond.   The strange thing is that it is quite curly.  The curls are everywhere, but the back is especially filled with ringlets.  Some nurses have told me that this is probably going to be how his hair stays.   But I asked the doctor we saw today what her opinion was, and she thought that it was possible that it will some day go back to how it used to look.  I guess only time will tell.  It's definitely a different look than any of us (including Justin) are used to, but as long as it's a healthy look, that's all that really matters.

We spent a few more days last week at Grandma and Grandpa's house.  Justin had lots more fun in the pool.   He also enjoyed using their pool table.   And he's getting quite good at it!   He beat me most of the times that we played.  I guess that doesn't say a whole lot, but he is still pretty good!  We've also gotten to the point where I don't make him wear his mask most of the time that we are outside now.  There are still exceptions to that, but he is slowly gaining more freedom. 

Our next appt is 2 weeks from today, August 6th.  I will try to update this website once before then to let you know how he is feeling and what he is up to.  Bye for now.   Have a great week!

Michele 

Day 145

Just a quick update to let everyone know that Justin does not have an appointment this week.  Because his kidney numbers appear to have stabilized, the doctors are comfortable with seeing us every other week now.  Tomorrow we are scheduled to go down to 15 mg a day of the steroids (we have been at 20 mg ever since we had to re-start this medication several weeks ago).  We are really hoping that this decrease will not cause any problems.  Trouble started before when we dropped down from 20 mg to 10 mg.  Hopefully doing the 15 mg for the next month or so (and the fact that more time has passed since the transplant) will make for a smoother transition.  He has been eating and drinking very well.   We definitely hope to see that continue in the coming weeks.  He feels good and is plenty active.  He even had a friend from school over one day last week for a few hours.  So, slowly Justin is getting more freedom.  We still have quite a long way to go to achieve total "normalcy", but we are so grateful for how far Justin has come.  Each day is truly a blessing.

Our next scheduled appt. is on Monday, July 23rd.  We'll have all of the new numbers then.  Thank you for continuing to check in on us. 

Michele

Day 139

The clinic visit today went well.  The counts are all very good:

WBC        6.45 (Normal is 4.5-13.5)

ANC        5440     (Normal is 1800 or greater)

HGB        11.9  (Normal is 11.5-15.5)

Platelets  223,000 (Normal is 175,000-475,000)

All of these are up from last week.  Also, Justin's creatinine (kidney number) was at 0.8.  This is also in a completely normal range.  This was all very good news.  He's still on the steroids, of course, and will be for at least the next six months.  It's a very slow taper this time around.  He continues to eat pretty well, and is maintaining his weight.  He's even branching out somewhat from the chicken nuggets at times.  Whatever he can get down these days is good.

It came as somewhat of a surprise today when the doctor said Justin may be able to go back to school in October if he continues to do well, even though he'll still be on steroids at that time.  I'm beginning to realize that at a certain point, they're really rather noncommittal as to what Justin can and cannot do.  They're not willing to say "yes, by all means send him back".  It's more like, "It's really up to you".  And this is only when directly asked..they never bring it up themselves.  Today's age of litigation I suppose.  So...we'll just have to see how it goes at the time.  There's a big overnight school field trip in October, and it sure would be nice for Justin to go.

Justin and Ashley both had a great time at grandma and grandpa's over the fourth.  Justin spent some time in the pool, although not underwater.  And most of the time outside these days he doesn't have to wear a mask, when not in public places.

Thanks for checking in.

Dan

Day 132

Today's appt. went very well.  Here are the numbers:

WBC               3.29

HGB               10.9

Platelets         204,000

ANC               2400

It sure was nice to see the platelets hit the 200's.  The other numbers all look good, too.  The kidney number was 0.9--exactly like it was on Friday.  So that was good news.  The doctors are going to keep him on the same low dose of the cyclosporine (anti-rejection drug).  They don't foresee ever really going up much on that since we now know that his kidneys just can't handle it.  But that's OK.  Everything looks good and we can add another medication to the mix some day if they think that it is needed.  We are going to remain on the same dose of steroids for the next week before we try to come down a little.  It seems to be the right amount for now because Justin has been feeling well.   No throwing up.   He is still drinking enough and is eating enough to get by.  He gained a few ounces.   Still not eating regularly, but thank goodness for Wendy's chicken nuggets.

We are now at my parents house and hope to stay here for 4 or 5 days.  This is the first time since the transplant.  So it's kind of exciting to see 4 different walls.   I'm going to allow Justin to go into my parents pool, although I told him not to go under water on this visit.  We don't need swimmer's ear or some other kind of weird infection.  But the doctors say that the pool is fine and he can even leave the mask off for a little bit.  We also hope to be able to go see fireworks on the 4th.   It's almost too much excitement after being cooped up for so long!! 

Our next appt is on Monday.  Hopefully there won't be any need to update before then.  Happy 4th of July to you all!   I'm so thankful to live in this wonderful country (not to mention having access to such good medical care).   We are indeed blessed.

Michele

Day 129

Well, the second half of the week has been much better than the first.  Justin got his IV fluids on Wednesday, Thursday and Friday.  We spent 3-4 hours each day at the clinic, but it was certainly worth it to avoid a hospital stay.  And the fluids seemed to do the trick.  He really started feeling better almost immediately.   He's gotten his steroid dose each day as well and it has definitely done wonders for Justin.  It's like night and day.  He has not thrown up at all since we started the IV fluids on Wednesday.  And he is drinking just fine and is even eating fairly decently.  So I could not be more pleased.  And to top it all off, his kidney numbers have improved greatly.  Wednesday's number was 2.1, Thursday's was 1.1 and today was 0.9!!  The doctor did give him a break from the anti-rejection drug between Wednesay and Thursday.  That really brought his number down.  Then after Thursday's appt, we started back on the medicine, but at a lower dose.  Even that brought the number down some.  It's reassuring to know that once we stop the medicine for good (which won't be for months), the number should go down pretty quickly.  Hopefully we'll be able to keep it at a decent level in the meantime. 

Thank you all for your prayers for Justin.   They certainly did work.  We go back to the clinic on Monday and should get all of Justin's blood numbers and his new kidney number as well.  I'll write again then.

Michele 

Day 127

I ended up taking Justin down to the hospital today.  I wasn't sure what to expect.  I had everything packed and in the car because I knew that being checked into the hospital was a very real possibility.  Since our last appt on Monday, Justin had thrown up over and over again and had basically eaten nothing and had very little to drink.  I was afraid that he was dehydrated and saw no end in sight to the constant vomiting.  I am pleasantly surprised that I am writing this from home and not a hospital room.  They started an IV in Justin's hand (since he no longer has a central line) and gave him several hours of fluids.  The doctor is quite convinced that all of the vomiting is the GVHD coming back.  I didn't like hearing that, but it is certainly not an uncommon thing to happen.  To combat the GVHD, the doctor started Justin back on the steroids.  We are starting at 20 mg and will slowly wean depending on how Justin is doing.  Unfortunately this could add months to the amount of time that he has to take the Cyclosporine (anti-rejection drug).  The doctor feles like it is totally necessary, though.  He expects that after a day or so on the steroid, Justin should be feeling much better.  If he isn't feeling better, then it might not be GVHD that we are dealing with.  But to be honest, Justin feels much better already.  He has not thrown up since we left the hospital and has been drinking some on his own.  He even ate 2 small donuts at the hospital as the fluids were going in him.  They gave the steroid through the IV so that it would be impossible for Justin to throw it up.  We came home today without fluids running through him, but the IV is still in his hand so that they can hook him up tomorrow morning without having to poke him again.  The plan is for us to come in tomorrow and again on Friday to get several more hours of fluids.   The doctor is hoping that Justin will be feeling good by the weekend.  If not, a hospital admission is still a possibility.  But I feel like we are at least heading in the right direction now. 

We are skipping the Cyclosporine pills tonight and in the morning.  The doctor wants to monitor Justin closely because today the kidney number went even higher.  We were at 1.4 on Monday, but today it was at 2.1.   So his kidneys are extremely stressed right now and need as much of a break as we can safely allow.  The doctor thinks that getting hydrated again will help at least get that number to where it was on Monday.

They also gave us blood numbers today.  I was not expecting that since we just got them 2 days ago.  Good numbers always make us feel better, though, so I was happy to see today's counts. 

WBC             3.12

HGB             11.5

Platelets      176,000

ANC            1920

The white blood took quite a nice jump and the other numbers held steady.  So all in all, I feel much better mentally today than I did yesterday.   I will try to update on Friday to let you know how the rest of the week went.

Michele

Day 125

Today's numbers are:

WBC            2.46

HGB            11.7

Platelets      178,000

ANC             not reported

These numbers were all a relief as everything went up.  This was Justin's first check-up without his line, so they had to draw the blood from his arm.  As usual, he was a trooper.  He does have a rash on his chest where the tape was after the surgery.  The doctor said to try putting some hydrocortizone cream on it.  The rash has spread on his chest throughout the week, but the doctor is pretty sure that it is from the tape and not a GVHD rash.  However, he is a little concerned that the GVHD may be trying to come back.  There is no way to tell for sure at this point, but the fact that he is eating close to nothing and is not drinking enough either is cause for concern.  He has thrown up most days this week.  He even threw up at the hospital this morning.  He lost 3 pounds this past week.  Yesterday was his last steroid pill (unless the doctors believe in coming days that the GVHD is truly back.  If that happens we will have to re-start a small dose of steroids).   We're still hopeful that maybe getting off of the steroid is contributing to most of his problems.  The doctor admits that that is a possibility, but says that we have to keep the thought of GVHD in the back of our minds.  He is still on the anti-rejection drug, although we are going down from 8 pills a day to 7.  This does not count as the official weaning of this drug.  We are doing it because once again his kidney number was 1.4.  His kidneys are really asking for a rest, but they won't be able to get complete rest for quite a while yet.  The doctor is hoping that somehow one less pill a day will help some. 

We got the doctor's approval today to slowly start letting Justin go outside without a mask.  Just 15-30 minutes at a time for now.  That doesn't sound like a whole lot, but it will be a major treat for him.  It is so hot outside that it's got to feel so much better to be able to breath and get some real fresh air in his lungs.   And not just feel it on his skin.  He still will have to wear a mask outside if other people are around, but we are thankful to be allowed at least a tiny more normalcy.

Our next appt is this Monday, July 2nd.  Please pray for Justin to be able to start drinking and eating by then.  I know that the doctors won't allow him to keep losing weight without doing anything about it.  And unfortunately they can no longer give him anything through his line at home.  If he needed fluids or nutrition at this point, it would mean a hospital stay.  I'm just believing that that is not going to happen and that somehow Justin will be able to start eating.  A number of kids do go through stages like this, even this far out from transplant.  I guess it is just a matter of riding it out.  But I can't tell you how hard it is to watch each day as it gets later and later in the day and he still hasn't eaten anything.  He tries real hard, but is just too gaggy and not hungry.   Not even for ice cream or chocolate mousse pie.  I don't care what he eats.  I just want to get some calories in him.

We'll get more numbers on Monday.  I may try to update later this week to let you know how the eating is going.  Thank you for your prayers.  Oh-one more thing.  Ashley got her cast off on Friday.  The doctor said that she has to be extra careful for the next week.  She is stiff and still a little sore, but she is exercising her fingers and is getting stronger every day. 

Michele   

   

Day 118 - Line Out

Justin had surgery this morning to remove his central line.  He's very happy about this, you can be sure.  It means no tubes hanging from his chest, and more importantly, no weekly dressing change, or, (drum roll) no daily shot.  He learned to dread the weekly peeling of the crazy glued saran wrap, and certainly is glad that he won't be doing it any more.  And although he learned to get used to the daily lovenox shot, he won't be missing that little ritual either.

His status today can be described, as usual, as "gaggy".  The last few days he's been eating somewhat, maybe 1 1/2 meals a day.  But today he had liquids only.  Hopefully this can be attributed to the surgery, and he'll pick up again tomorrow.  He's in pretty good spirits for now.  We're just waiting on those counts to come back, and his appetite to get back to normal.   

We'll get more counts on Monday.  Thanks very much for checking in. 

  Dan

Day 115

It's been a bit of a frustrating week, but I think we are hopefully on the upswing now.  Justin has been extremely "gaggy" all week.  Not just in the mornings and evenings, but all day.  He has been throwing up quite a bit and has eaten very little.  The last 2 days he ate maybe 200 calories a day.  And he couldn't even do that until nighttime and with a lot of begging and cajoling from me.  He really was trying, but just felt so horrible that he just couldn't do it.  I was beginning to get worried, so I called the clinic yesterday.  They didn't think that it was necessary to see us since we had our scheduled appointment for today.  They did order IV fluids, so a home health care nurse came to the house yesterday and set us up with that.  They are running through his line 24 hours a day and will continue to do so until Monday morning.  We still have the go-ahead to get his line out on Monday!   So Justin is very excited about that.  We need to be at the hospital at 8 a.m.  Early start, but it will be worth it.   Justin is starting to feel better today.  He still didn't eat anything until after 3:00, but at least he seems more open to the idea today.  And it's wonderful to see him happy and in a good mood again.  The last few days he pretty much confined himself to the couch and you could tell that he was just miserable.  But like I said, he is starting to do better.  And the nurse practitioner that we saw today thinks that he looks great.  She thinks that his vomiting issues may be viral.  She said that there are a number of BMT kids in the hospital right now that have been admitted for vomiting.  She said that there is some sort of a "bug" going around.  It seems odd to me, since Justin is so isolated and nobody else around him is sick. And he just hasn't acted like this was a virus, in my opinion.   But she reminded me that his immune system is still so suppressed right now.  And she said that this is the time of year for this sort of illness.   

Justin's blood pressure was good today, so it was a good call to stop that medication last week.  He actually only lost a little more that 1/2 of a pound this week.  I was absolutely shocked because I know that he is eating close to nothing.  I guess those IV fluids that we started yesterday pumped that number up. 

Todays numbers were:

WBC           2.19

HGB           10.7

ANC           1520

Platelets    153,000

These numbers were extremely disappointing to me.  Especially after the nurse practitioner walked in and announced that his numbers were great.   She assures me that they are all totally fine.  There is another number that she said shows that Justin is making a lot of good, healthy cells.  I like the sound of that, but I would have liked to have seen it reflected in today's counts.  The WBC has never been so low since we were in the hopsital.  And all of the other numbers dropped, too.  She thinks that some of the drop could be from the lack of eating and from the throwing up.  Plus, if he did indeed have a virus, then that could contribute to the low numbers.  I really expect them to go up at the next visit.  (That won't be until Monday, June 25th).  His kidney number remained exactly the same as last week- 1.4.  Again, I was hoping for something more positive, but it takes time.  At least it didn't go up.

I guess that's it for now.  Thank you for your continued prayers.  We'll let you know on Monday how the surgery went and how Justin is feeling. 

Michele

Day 108

Today was just the kidney check.  The number actually went up from 1.3 to 1.4.  Obviously, that was not the direction that we wanted it to go, but at least it isn't too much higher.  So the strategy for now is to go down to 200 mg a day of the anit-rejection drug instead of the 300 mg that Justin is currently on.  That drug is known to be extremely hard on the kidneys.  We go back on Friday the 15th (I imagine that we'll get regular blood numbers then as well), and if the number still has not improved, then we might have to add a different medication.  So, we will see. The doctor is still confident that this number will get under control, but he doesn't really expect to see much change for the next few weeks. 

Justin's blood pressure was on the low side today, so we are going to discontinue the blood pressure medication and see what happens.  I imagine that he will be able to stay off of that med since he is on such a low dose of the steroids right now.  He lost about 1  1/2 pounds since Monday.  I expected that since he has not been eating too much.  He is drinking fine, at least.  He still is "gaggy" fairly often, so we are continuing with the anit-nausea medicine before pill time.  It's helping, although he did still throw up once yesterday after taking the pills. 

Now for the Ashley update:  she is sporting a pretty pink cast.  She actually is fine with it.  It's water proof and feels much better than her splint did.  And the good news is that hopefully she will only have to be in it for 2  1/2 weeks.   They will X-ray again and decide if she can be totally done or if she needs a splint at that point.  Another cast might be possible, but the doctor is guessing that she will be totally healed by then.

Thanks for checking on us.

Michele

Day 104

Today's appointment went well.  His numbers are:

WBC          3.69

HGB          11.2

ANC          2860

Platelets   165,000

I was happy to see that the WBC came up some.  I certainly did not want to fall into the 2's.  The platelets are exactly the same, which I'm very satisfied with since it's still the highest that his platelets have been since transplant.  The hemoglobin dropped a little, but anything in the 11's is still excellent for this stage of the game.   Justin's kidney number went from 1.4 to 1.3.  (It was 1.6 last week).  So, once again that is only a slight improvement.  Normal for Justin would be .4, but the doctors would be happy with anything under 1.0 for now.  The elevated number gets him a treat, at least.  No anti-rejection pills tonight or tomorrow morning.  We go back to the hospital on Friday to get the kidney number tested again.  There won't be any other numbers that day.

The pill routine went better over the weekend.  I got a prescription for an anit-nausea medicine on Friday to give to Justin about an hour before the dreaded pills.  Unfortunately, it seemed to be totally ineffective on Friday night since he ended up throwing up anyway.  But since then, it's worked pretty well and Justin has been able to take the pills a lot quicker, and without vomiting.  He still is pretty gaggy at times throughout the day.   The doctors can't say for sure what that is from.  There are so many possibilities.   It could still be GVHD, but we did get the go-ahead today to come down one more time on the steroids.  From 10mg to 5mg.  (He originally was on 50mg).  The doctor said that usually from 5mg to 0 is a much tougher wean than from 10 to 5.  The body just gets so used to having something in its system. 

Justin gained about 2 1/2 pounds from the last appt.   That was nice to see since at our last visit he had lost about 2 1/2 pounds.  He's eating fairly well these days, although certainly not normal.  His blood pressure is still very good.  I was surprised to hear that we could stop the Fluconazole today (that's the anti-fungal med).  That's 3 less pills a day--yeah!!!  Usually, you stop this med at Day 100, but I was under the impression that he had to be off of the steroid first.  But I certainly like it this way better.

The really good news is that it looks like Justin will be getting his line out in on June 18th!   We don't have a time yet, but if all goes according to plan, then that should be the day.   It's surgery, but Justin is fine with that.  He just wants that thing out of there.  It's so much more annoying than his port was because it hangs down to his waist.  When it is out, he will be able to take showers again.  (Don't worry- he's been taking an occasional bath the last few months, so he doesn't stink too badly).  No more line will mean no more daily shots!   Now that is reason to celebrate! 

I guess that's about it for now.  Tomorrow is Ashley's appt to see if she is getting a cast or another splint.  We'll let you know on Friday what that outcome was and also what Justin's latest kidney number is.  Bye for now!

Michele

Day 101

Well, Day 100 has come and gone.  I can't say that it was too exciting.  At least not in a good way.  Justin has been extremely "gaggy" lately and ended up throwing up twice yesterday--right before his evening pills and then again about 30 minutes afterwards.  Later he said, "I didn't want to throw up on Day 100".  And to top it all off, to help celebrate Day 100 I ended up taking Ashley to get her hand/fingers X-rayed.  (She had taken a spill off of her scooter the evening before).  The X-ray confirmed that she did indeed break the bones right below 2 of her fingers.  It is her right hand, so I guess that it's a good thing that this happened on the last day of school.  Although, it's not the greatest of ways to start out the summer.  Tuesday I have to take her to an orthopedist.  They will decide if it's a bad enough break to require a cast or if she can get away with just the splint for a bit longer. 

Anyway...  onto Justin's appt. today.  His kidney number went from 1.6 to 1.4.  So that was a slight improvement, but obviously it has a ways to go.  Now we have to go back on Monday for a re-check.  We'll get all of the blood numbers that day as well.  We will continue with the same doses of the anti rejection drug and steroid.  They do not want to lower his anti rejection medicine because they already came down on it some last week and you should not be tapering both of the meds at the same time.  When we go back to the hospital on Monday, they will decide if we can lower that steroid one more time as the tapering schedule calls for.  That is not a done deal yet because the doctors want to be very convinced that there are no signs of GVHD before we lower the dosage.  And Justin is showing some possible signs of it between the vomiting, cramps and a few other things.   However, it's possible that it is all unrelated.  We will see what happens on Monday.  They just want to be careful because they would rather keep him on the same dose for a little longer rather than dropping the dose and then having to go back up on it again.

I guess that's it for now.  We should be writing more on Monday.  Have a good weekend.

Michele

Day 99

Today's numbers were:

WBC              3.18

HGB              11.6

ANC              2270

Platelets       165,000

These are all considered to be good numbers.  The WBC took more of a nose dive than I would like, but they assure me that all is well.  That still could be because of the lower doses of the steroids (steroids can falsely inflate the white blood count).  The hemoglobin is exactly the same as last week, so that's a very good thing.  In my mind, the great news is that the platelets took quite a big jump.  This is by far as high as they have been since the transplant. 

Justin felt better this weekend than he did last week, although he is still having issues.  Pill taking is still a major chore since he is so "gaggy" for much of the day.  His mouth pain is completely gone, so that has helped some with the eating.  I was surprised to see that he hadn't lost any more weight since last Friday.  He actually gained 2/10 of a pound.  I'm not sure how that is possible.  He's eating much better than last week, but certainly not normal.  Must be the bacon I"ve been making him at home.  Also the Wendy's burger, fries and frosty that he's had every other day or so.  That's right, we've finally given him restaurant food.  Our hospital is very conservative in that area.  Many other hospitals seem to allow restaurant food, as long as you don't eat it in the restaurant.  Justin hasn't even been allowed take-out.  Tomorrow is Day 100!   Although that is really exciting, not much changes for us tomorrow.  So food from the outside world is at least a small consolation.  We don't have an exact date to get Justin's central line removed yet, but they are still saying it will probably be mid to late June.

We will be heading back to the clinic this Friday.  This is because they want to re-check Justin's kidney numbers.  A lot of the medication that he is on is really hard on the kidneys.  A small percentage of kids who've had transplants actually end up on dialysis down the road .  We are not anywhere near that and the doctors totally believe that they will be able to get Justin's numbers under control.  His pre-transplant kidney number was .4 and right now it is at 1.6.  They expect it to maybe double because of all he's gone through, but to quadruple is way too much.  So we get to skip 7 of his pills tonight (a major treat!) and tomorrow re-start that particular medication at a a little bit of a lower dose.  The doctors hope that this will start to help his numbers.  Friday's number will determine when they want to see him again.  It's so funny.  The doctors use the phrase, "His kidneys are not happy".  However, Justin told me in the car afterwards that his kidneys are "very happy".  Maybe I should just accept Justin's self diagnosis and skip Friday's appt???

Justin's skin looks the same as it did at last week's clinic visit.  So they are still not willing to say one way or the other whether or not it could be a GVHD flare-up.  But the fact that it is not looking worse is good news.  As long as it doesn't get worse, we are still on target to cut down one last time this Monday on the steroid.  So, if all stays on schedule, he would be off of the steroid completely in about 4 weeks.  That will be nice, but it will be even nicer when he gets off of the anti-rejection drug.  That won't be until September or so.  Every little bit helps, though.

Overall, l would say that Justin is doing well.  He still gets leg/foot cramps during the night and some bad finger and hand cramps during the day, but they may be lessening some.  We still go outside to play in the evenings after dinner (although it's getting tough with the mask as the days get hotter)  and he is still able to ride his bike or skateboard.  Or better yet Ashley's new birthday gift--an electric scooter.  He's got plenty of energy and is still often lying in bed awake at night when I'm ready to go to sleep.

We'll let you know how Friday goes.  There won't be any blood counts--just the kidney numbers.  Until then....

Michele   

   

Day 95

Justin had an unscheduled visit to the clinic yesterday.  He woke up with his mouth and throat hurting, and his lips numb.  There are two things to worry about with these symptoms...some kind of infection, or a flare up of GVHD.  It turned out the doctor wasn't concerned too much about either of those options after looking at Justin.  He does have some potential signs of a GVHD rash on his legs, but nothing definite yet.  Thankfully, there is no need yet to stop his steroid taper, which would not be the case if a definite diagnosis of GVHD flare up is given.  We certainly don't want this to happen, as our goal is to get off steroids completely, and then start to taper the other anti-rejection drug, Cylcosporin.  As of now, Justin is still scheduled to go down to one steroid pill a day on Monday, June 4th, which is the last checkpoint before being pulled off completely.  We think that the steroid taper has also caused a lot of problems for Justin, because withdrawal from this medication can be very difficult.  His appetite has gone way down, and he's lost a couple of pounds.  He also feels gaggy for much of the day and night, and even threw up once last evening.  This is all to be expected, and it's still a very good thing that he's coming off of this medication.  Without the steroids, his immune system is a little more functional.

Thanks for checking in.  There'll be another update on Wednesday after the next clinic visit.

Happy Memorial Day.  Remember the troops, one of whom is now my niece Jessica in Iraq.  Hang in there Jess, we're all proud of you.

Dan 

Happy Birthday Ashley

The Giver turned 12 today! (May 23rd)  I can't believe my little girl is almost a teenager.  I'm so proud of her, and all that she's done.  It's all been tough on her too, and she's handled it so well through the years.  And what she gave to her brother just three months ago can't be topped. I think she deserves to skip a year and be called a teenager today. No,  I guess I don't want her growing up *quite* that quickly. 

Dan