But as you will see further down in this post, we are far from escaping the woods.

First of all, let me say that Cutler is still impressing the doctors with his blood counts and still proving to be strong with a negative attitude around the house.  We have had a few bowel movements over the past two days and occasionally his happy side shines through, but for the most part he continues to be very fussy.  We have started to push formula, via the gtube, an ounce or two at a time throughout the day to see if this helps and to also try and push him towards the feeling of filling his stomach the same as he would if he were drinking from a bottle.  As for eating and drinking he is showing more and more interest in drinking from the sippy cup and at times drinks a good amount and occasionally eats solids.

As I mentioned, his blood work continue to looks good and we have yet to have a transfusion in over a month.  On day 100, the doctors do want to do another spinal tap to check the spinal fluid for any blasts as well as apply a dose of chemo while they are in there to be safe.  They will also perform what we hope will be the last bone marrow aspirate to check for leukemia.  And finally, they will perform the test that determines the percentage of the white cells from the old and new marrow.  We are currently on day 85.

While all things are good, we were unfortunately reminded this week of how quickly things can change.  Lucas Gebert, Cutler’s “cancer twin”, had to go back into the picu two days ago with what looks like an infection.  They are still waiting for the results of the culture, but the fever and blood pressure is now under control.  You can follow his progress at their caring bridge site. http://www.caringbridge.org/visit/lucasgebert  The night before he showed signs of an infection, he was eating and playing and just being a normal healthy baby.  It is amazing how quickly infections can come on and this serves as another reminder that we still have a ways to go.  Please pray for Lucas and his family as they fight this infection.

Also, a good friend of the family and the wife of the doctor that my sister, Angie, works for has passed away from heart failure.  She was younger than I and this came completely out of the blue.  I don’t want to go into all of the details, but Dr. Joe also has cancer and so they were already in a long battle and now these poor kids have lost their loving mother.  Please add the Schallert family to your prayers.

I still sit here in shock at what all has happened in just these past few days and how quickly they rose from nowhere.  It is easy to get caught up in the constant hustle of the day, but both of these occurences serve as a strong reminder to not take anything for granted and to cherish every second of every day that I have with my family.  I now cherish the fussiness and the laughter from Cutler, I cherish the way Mason drives us insane with his procrastination when getting ready for school and eating, and I even now cherish the way my lovely wife forgets to turn down the monitor when she gets up on her mornings to get Cutler out of bed. 

And one more prayer request goes out to our last neighbor from the 12th floor, Trent Floyd.  He is a two year old that had neuroblastoma.  I am sure I mispelled that, but Trent is home and thoroughly enjoying french fries and life.  All is going well with him and his family right now, you can follow his story at http://www.caringbridge.org/visit/trentfloyd.

Thank you everyone for your continued thoughts and prayers and for following through my babbling.

It continues to be a blessing to have Cutler at home with us, unfortunately he doesn’t seem to be enjoying it nearly as much as we are.  The last few days he has been constantly fussing.  At first we thought it was his teething, but then tyelnol and orajel stopped working.  Then we realized that he hadn’t had a bowel movement since Thursday.  After two days of stool softener, suppositories, and mineral oil he finally was able to push through this road block.  Because it happened right before he went to bed, we aren’t sure if this has resolved the issue yet.  My biggest fear is that he is fussy because he is so accustomed to having someone with him constantly.  If this is the issue, I fear the only solution is the tough love/cry it out approach which won’t be fun for anyone.

Aside from the fussiness, his blood work continues to look great and the doctors have cut us back to one visit per week already.  His platelets were almost at 200k and hasn’t had a transfusion for what seems like at least a month, but I am not sure on how long it has been.  Either way, the doctors are extremely pleased with the progress.  We will still do another spinal tap and bone marrow aspirate in a few weeks to be sure there aren’t any stragglers hanging around.

Unfortunately Cutler has lost all interest in drinking and eating.  Hopefully the recent emptying of his system will stem this along.  We haven’t had an occupational therapist visit since we were in the hospital, so we are anxiously awaiting that to start back up soon.

For now we just continue to pray for Cutler to be happy again and for us to find what makes him happy to have patience to continue to work with him on getting happy.  Kobi, his new nanny, has now been with us for a week and tomorrow starts her first day with him all alone, without Aunt Pat’s discerning eye.  So far she seems to have the perfect temperment to handle him and I think they will get along well.

Below are a few pictures from the past few days.

Cutler and Kobi during one of his few happy moments.

Cutler ready to head outside for a walk.  Being outside is one of the few things that seems to soothe him.

The smile comes as the door opens.  “Dad, enough with the pictures, get out of my way.”

The weather people are talking about more snow again this week.  Let’s hope it isn’t enough to do this again…

As every day passes, I realize more and more how much I took for granted having my family together.  I can remember, precancer, how I really didn’t grasp how special it really was to all be together.  Yes, I thought it was great to have the two boys together and I loved watching Mason hold Cutler and show an interest, but now that it was taken away and given back I hold it ever so dear to my heart and even the slightest interaction between the two of them continues to remind me to keep it close.

I think Mason is realizing how great it is to have a baby brother around.  He loves to see him in the morning and when he gets home from school and he insists on telling him good night…even if Cutler is already asleep.  “I promise I will only whisper it to him”, says Mason.  Below are a few pictures from this morning that ordinarily would be just cute, but to me have such an extra special love and meaning to them.

Almost forgot how protective Mason is.  Tonight Mason was taking a bath and Melanie asked if Cutler could get in and Mason’s response was “sure, as long as he is naked and you don’t get the button wet.”  He was referencing the feeding tube “button”.  He was so concerned about it, that is until he realized that Cutler liked to laugh at him splashing.

Just another subtle reminder to support Ginger in her fundraising effort if possible.  She is already almost half way to her goal and remember that the proceeds go towards fighting this ugly disease, in honor of Cutler.  http://pages.teamintraining.org/ntx/rnr10/gingerrogers

This morning was Cutler’s second doctor’s appointment and everything continues to look good.  His platelets were at 115K, which is phenomenal to be producing at such a high level this early in the transplant process.  His RBC is at 9.8 and his WBC his holding strong at 6.9.  Dr Weinthal is extremely pleased with his continued acceptance of the new stem cells as his skin still looks incredible, per Dr Weinthal.  The skin condition is a good sign of GVHD and so to see perfectly clean skin always makes the doctor happy…and mom and dad. 

Cutler’s eating habits, on the other hand, aren’t showing much improvement.  Sometimes it seems like he is really into drinking from the sippy cup, but then he quickly loses interest.  We also continue to feed solids and he usually does a good job of putting them in his mouth, but tends to lack the ability to swallow.  He usually swallows about 25% of what he puts in, but the doctor assures us that he will eat in time.  Until then, he is doing a good job of tolerating the feedings via the pump/tube.  We are currently up to 48 ml/hr for 14 hours and the doctor is happy with this.  We are trying to work our way to 60 for 12 hours, but don’t want to push it too fast.  However, I think we will be there by the weekend.

Ever since we got home Cutler has been extremely fussy.  Much more so than we have ever seen.  Initially it seemed like it might be due to the adjustment of one small room to a multitude of rooms and options for toys. While this does seem to be part of the problem, we have also found that he is teething and so with the application of orajel and some tylenol his happy side is starting to come back slowly but surely.  Despite it all, he is doing a great job of sleeping through the night and providing me comfort with naps on my chest throughout the day.

Cutler’s new best friend to be, Kobi, has arrived in town.  If you don’t remember, Kobi is Melanie’s cousin who recently graduated from Wyoming and has agreed to live was us and watch Cutler for at least the next six months.  So far so good as she seems like a reasonable young lady despite being from the non cajun side of Melanie’s family.  🙂  We are happy to have her here and hopefully Cutler’s recent fussiness won’t cause her to have regrets with making the 1o00 mile drive.

Just thought I would post a few of the common questions, along with my understanding, that I get from friends and have asked the doctor as well.

What does the stem cell transplant mean?

By receiving the stem cells from a random cord blood donor the end result is to build new bone marrow.  The intense chemo therapy prior to the transplant eliminated his original marrow, thus leaving room for the new stem cells to attach and grow into bone marrow.  The ultimate end result is for the new marrow to take over as the old marrow is what was generating the leukemia.  A nice analogy that the doctor has used is that it is like destroying everything in a garden in order to get rid of the weeds and then replanting.  In this analogy, the weeds are leukemia and the roses are the new marrow.

If the transplant process kills the old marrow, why did the test results show 30% from the old marrow?

There is a possibility that the old marrow wasn’t completely destroyed.  It is also possible that the 30% cells that were found were just old cells that were around prior to the transplant and are actually in the process of being exterminated.

 Can the ratio of old marrow to new marrow change?

Yes, as the new marrow continues to grow it should increase in the amount of production.  Usually the test that was run is performed on day 100, so the initial results were a bit premature.  The doctors expect/hope that when we run the test again on day 100, we will find a much more favorable ratio.

 Can the leukemia return?

Yes, the leukemia can return, but hopefully the new marrow can trump any potential leukemia from the old marrow.  Ultimately the new marrow will begin generating at least 95% of the new blood and cells and if the old marrow starts to generate leukemia “type” cells the new marrow cells will be strong enough to kill it off.

 Can Cutler have visitors or go out in public?

Now that Cutler is home we are just trying to keep him from any potential infections and illness.  We are limiting his exposure to anyone that could potentially cause an infection.   Cutler is allowed to go outside for walks, but must be kept away from others.  We can have visitors, but are trying to keep it minimal and no one under the age of six for at least the first month.  As time goes on we can start to expose him to more, but it is a gradual process over the next six months.

 What are the next steps?

For now we continue to work with Cutler at home on eating and drinking so that we can get him off the feeding tube.  He is currently on five different medications to help with potential infections, fight off graft versus host disease, fight off pneumonia, stimulate the digestion system, and stimulate hunger.  We also continue to go to the doctor (currently multiple times per week) to have blood tests run to monitor his levels and watch for any potential return of leukemia.  Over the next six months we will look to ween him from the different medications and watch for any chronic graft versus host disease.  In six months, Cutler will need to repeat the immunizations as if he was a newborn.  At this time we can begin to look at returning him to daycare.  Until then, we have Melanie’s cousin here to help serve as a nanny.

 How long until Cutler is “cured”?

From what the doctors have told us, they really don’t feel comfortable classifying this as a cure until he is at least five years old.

This morning I woke to almost two inches of snow on the ground and it hasn’t stopped snowing since.  In my 10 plus years living in Dallas I have never seen it snow like this.  It is most impressive.  Mason came running down the stairs this morning telling me it was snowing and that it is Christmas Eve (the last time it snowed).  Every time we would go outside or get out of the car I was getting hit by snowballs.  So, after school we finally took some time to play.  We put forth a miserable attempt at a snowman, made snow angels, threw snowballs at each other, the neighbors, random cars passing by, and at Cutler as he stood inside looking out through the dining room doors.  Unfortunately the fun was cut short as Tau got a bit excited and bit Mason’s hand while he was handing her snow to eat.  No worries though, Mason has nine other fingers.

First of all, thank you everyone for your thought and prayers and congratulations for getting Cutler home.  It is an incredible feeling to have both of the boys home and to get to wake up to my beautiful wife every morning.  Three months doesn’t sound like a long time, but it is an eternity when your family is separated.  Our first two days home were a bit stressful as we had to learn how to operate the food pump, figure out the different medicines, work with Cutler on a schedule, and just adjust to not having nurses around for anything we need. 

Finally, today, I feel like we have settled into a good groove and we owe a lot of that to having my parents and Aunt Pat here to help as we made through the transition.  The first couple of days also seem to have been a bit difficult on Cutler has he has been very vocal and his happy go lucky personality disappeared for awhile.  I am sure it is just a matter of adjusting to a brand new surrounding, but it can be frustrating at times to not be able to make your baby happy.  However, for some reason, tonight he just seemed to snap back to happy Cutler again, or at least as close to happy Cutler as we have seen in awhile. 

We did go to the doctor today for our first visit since getting home and the doctor was extremely pleased with the blood tests.  His platelets continue to soar, the WBC is in the 8K range, and even his red blood count is looking great.  Everything is looking so good that they have decided rather than have us come in every other day, we aren’t going back until Monday morning.  So yet another positive step in the right direction. 

Even though we are home, it is important to not lose site of the big picture and realize that we are not out of the woods yet.  I am working on another blog to help answer a lot of questions that I have been asked by different friends and family as well as have asked myself.  Hope to have that up by tomorrow afternoon.  In the mean time, we truly appreciate everyone’s continued support and prayers.

Below are a few pictures taken from the past few days, including our great escape from the hospital…

Melanie is happy to help the cleaning crew have a little less work after we left

Cutler is hungry for a good season of Cubs’ baseball to start (no disparaging comments please)

Cari and Crissy, Two of Cutler’s Angels

Superbaby!

Look at the devious look on Cutler’s face, he is ready to raise some heck!

The patient big brother ready to carry him on his back.

Oh yeah, Cutler is showing a lot of interest in skipping the crawl and moving straight to the walk.

Couldn’t make it home without falling asleep.

Tau assumes her position of protection.

Will try to post more later as we begin to get settled in.

You can hardly tell that these two photos were taken five years apart.  Well except for trading in a salad for Cutler and the missing tooth for Aunt Pat.  🙂

November 2004

Five years and apparently one new tooth later…

No major updates or minor for that matter.  Cutler continues to do well and is now up to 30ml as they continue to increase every 12 hours.  At this pace, it is still possible he could be home by midweek.  Melanie is back in town and spending the night with him and so all is almost right in the world again.  The doctor has emphasized that if I have any cold symptoms to stay away and so I stayed away yet another day.  Just a cough and a sniffle that I hope will be gone tomorrow, but now grandpa is starting to feel it come on as well.  Guess we will have to throw him out if Cutler comes home before he heads home.  🙂

Since I am in the middle of digging through old photos, I thought I would share this one of Cutler’s first feauxhawk.  He was five weeks in this picture.