Happy At Home

Not much to update from yesterday.  Cutler is still at home and still doing well.  Melanie and I did get a chance to meet with another oncologist today for a second opinion and she assured us that we are definitely in good hands and that the treatment he is receiving is definitely what they would be doing as well.  Some other things she pointed out are that his form of Leukemia occurs usually only 500 times a year, but the chromosomal portion is one that is extremely rarely seen.  I could try to go into medical speak, but I would butcher it pretty bad.  So basically it is so rare that there are no studies for this as there haven’t been enough cases.  Cutler continues to prove that he is a rare baby and that he will be the trouble maker in the family and most likely the chief cause of grey hair easily trumping Mason.  We do have an appointment tomorrow morning at 8:30 and hopefully will receive good news about his last spinal tap as well as they will draw more blood to track his progress.

That’s it for now.  Will update tomorrow as we get more news.

What's this I am strapped into? A car what?

Cutler’s platelets and the measurement of his immune system, still can’t remember the acronym, continued to rise and so as soon as he woke from his second nap after the spinal tap we were on our way.  Melanie and I figured out that we were in the hospital for 26 days so far.  It really kind of flew by, it feels like almost yesterday that we were peeling ourselves off the floor and figuring out which way was up.  It was so long in fact, that I think Cutler was extremely confused as to what he was being strapped into when we put him in his car seat (picture above).

He was also very sad to leave the company of his nurses, although we will be back soon.  He was especially sad that his former favorite nurse, Kammie, was not there to say goodbye on this special day.  I do want to thank all of the wonderful nurses, pcas, and of course the doctors as they have all been tremendously supportive and are feeling just like a part of the family.  They were always there to help educate, entertain, and most importantly take care of Cutler. 

Kammie who? 🙂

Geez, now I sound like we aren’t going back.  We will definitely be back, not sure of the time frame yet though as it all depends on how quickly his blood gets back to the right levels to endure another round of chemo.  Anticipating that it will be 7 to 10 days.  And I am sure we will be happily greeted by these smiling faces.

Cutler's Angels

Cutler wasn’t upset, just still experiencing the joys of narcotics.

Cutler's Angels 2

Ok, so it’s not Kammie’s fault she wasn’t there.  Cutler will forgive her in time and I refuse to get in the middle of the battle for favorite nurse.

Kammie Is Forgiven

So now we are sitting at home and everything finally feels in place.  Mason was extremely surprised when he walked in the door and found Cutler playing away.  And you should have seen the reaction from Cutler.  The bond between these two is amazing.  Right now they are sitting next to each other in their seats watching a movie and smelling the wonderful dinner that Melanie is cooking.

Thanks to everyone for their continued prayers.  We still have a long road ahead of us starting with Cutler’s first trip back to the clinic on Friday for blood tests and followed by Mason’s test on Monday.  As a reminder, the blood drive organized by Tiffany Solis at Cutler’s school is scheduled for this Friday from 12pm to 4pm.  Details can be found here: https://teamfricke.wordpress.com/2009/10/02/blood-drive-for-cutler/

Watch out for my teeth...and my smile

First things first, as I am sure everyone that reads is wondering, Cutler’s blood work continued to improve.  His platelets increased again and his reading that measures his ability to fight infection is at the minimum level the doctors want to see in order to send him home.  So barring any major issues, tomorrow after his spinal tap we will be bringing Cutler home for a little bit.  While I am still scared to death of him catching something, I am terribly excited to have the entire family together and not sure of the dates yet, but it would be an added bonus to celebrate my birthday without being in the hospital.  Fortunately for us, unfortunately for him, Dr Ghisoli lives right around the corner in case there any issues.  🙂

Today was another excellent day for Cutler and tonight was a great father/son night for the two of us.  He has been incredibly playful and cuddly tonight and I couldn’t get enough of his hugs and he couldn’t give them enough.  It is amazing how much love comes from such a small package.  Cutler also recently found his voice and loves to just lie there and scream out.  I have attached a video below where Cutler and I took turns growling. 

Now, I hate to be Debbie Downer, but I do want to reiterate that this trip home is only temporary and by no means is Cutler cured.  I mention this because it helps me cope with this fact.  I often fear that I have my head buried in the sand and just hear the positives, but I do know that in the end with everyone’s thoughts, prayers, continued support, Cutler’s strength and determination it is God’s will for Cutler to win this fight in a glorious manner as he has greater plans for him in the coming years.

Super Baby!

Some bad news this morning followed by some good news…seems to be the norm nowadays.  First of all, the results are back on the spinal tap and it wasn’t completely clean.  There was only one cell that was deemed cancerous.  According to the doctor, this is pretty close to clear, but we will need to have another spinal tap on Wednesday and then depending on the blood work tomorrow and Wednesday morning perhaps bring him home.

That’s right, the doctor is so impressed with his recent blood work that he believes that he is possibly in early remission and based on his increased ability to fight infection he is ready to send him home on Wednesday after the spinal tap.  We were shocked based on what we had decided only yesterday, but he really didn’t expect the blood results to come back the way they are.  His ability to fight infection has increased and his platelets have increased without another transfusion which is a very good sign of improvement.

Now remission does not mean that he is cured, which was my original thought before further education.  Remission is just a sign that the cancer is “under control”, but not gone.  If he does get to come home, it will be until his next round of chemo.  We are still working on getting Mason tested as the transplant still needs to occur, which if all goes well could occur after the second round of chemo. 

Now just to temper the potential excitement, this is all still a maybe and hinges on the next two days.  We realize that things could change just as quickly in the opposite direction as quickly as they changed to the positive this morning.  So for now, we will just continue to pray and hope that our little family will be home together for at least a week.  When Cutler was in the NICU he consistently beat expectations and so he continues to do so in his battle against cancer.  Will continue to keep you closely updated over the next few days until we know for sure.

Special shout out to Aunt Ellen for sitting with Cutler tonight and letting Melanie and I go out for a nice relaxing dinner tonight. 

What? Run after the ball?

Mason finally got the opportunity to play soccer outside on the grass this weekend and I think he enjoyed it even more.  Although his play appears to be regressing a bit from his two goal debut in the first game, he is still having a lot of fun.  We need to work on his aggression and getting after the ball a bit more actively, but I blame the passive attitude on his solid Montessori education.  🙂  They have done such a good job of keeping your hands to yourself in school, that Mason sometimes runs with his hands behind his back just like he would when walking in line at school.  It’s a good thing for manners, but something we must break for sports.

Apparently one thing we don’t have to instill, yet, is toughness.  Mason was on a breakaway and took a pretty hard fall forward.  I fully expected tears to follow, but he proudly got up and looked at me and proclaimed, “I didn’t cry!” and started back towards the ball.

Breakaway!

And down goes Mason, down goes Mason

Nonetheless, it was a beautiful day to be outside for some very entertaining four year old soccer followed by a nice tex mex lunch on the patio with Mason, mommy, papa, grandma, grammy, and aunt Ellen.  Aunt Pat was gracious enough to hang at the hospital with Cutler so we could have a big family outing.  I suppose at some point I should introduce all of the players as we are getting a great amount of support and free time as they graciously hang with Cutler at pretty much any time we want.  But that is for another post when I am suffering from writer’s block more than I am right now.  Besides, Curb is on and I need some good comedy.

Tickling his own toes now

We finally met 2 on 1 with Dr. Goldman today, rather than hearing second hand his thoughts and now we may be into an even greater information overload, but in the end it is almost all good news.  First of all, in the last post I mentioned that Cutler’s spinal tap came back clean.  As it turns out, that was just a blood culture and we are still awaiting the results and expect to hear back tomorrow on the results.  This is the only semi bad news.

The good news is that the doctor believes that Cutler is responding better than expected and even offered for us to bring him home for seven to ten days before his next round of chemo.  We were pretty honest that we were frightened of this idea and he mentioned that although he is willing to let us bring him home his preference is that we keep him in the hospital and so we all came to agreement that Cutler will remain for close observation and to continue to hide him from potential infections.  But he is pretty comfortable with the idea that he will come home with us after the second round is complete.

He does want to go ahead and get Mason in for the blood test to see if he is a marrow match this week if possible.  Dr Goldman believes that if Cutler continues to respond the way he is, it is feasible to consider a marrow transplant as early as after the second round of chemo.  They do have someone in their office that does an amazing job of drawing blood from children and so I feel a bit better about it.  Apparently they play with Mason for a bit to get him to relax and rub some type lotion on the arm to help it numb the area before inserting th e needle.  We haven’t told Mason yet, but it is looking like we should go ahead and get this out of the way.  I would love for him to be a match, because I know that he would be so proud that he would have helped save his life by providing a part of him.  He really is an incredible big brother.

Eating solid food is fun

On to more non hospital stuff, we did start feeding Cutler some solid food for the first time today.  Despite it being his first time he did fairly well.  Of course it is hard to tell how much he actually ate, but he appeared to like it and had his usual smile working away.  We are hoping that adding solid food to the diet will help calm the appetite.  Last night with a three hour time frame I believe I fed him close to 20 ounces of milk and formula.  Unfortunately he awoke during the 12:30 am vitals, but fortunately he did sleep through the 4:30 am check in and stealing of blood all the way until 6:30 am when he woke up not screaming for milk but smiling and ready to play. 

Melanie and I did get some quality alone time with him before the family gladly came down and sat with him throughout the day to give us some quality alone time at home as well.  Alone time in that Melanie was alone to nap in her room while I was alone to watch football in the media room while Mason was off on a play date at his good buddy’s Parker.  🙂  Thanks to Karin and Darren for wearing him out for the second Sunday in a row.  He really does enjoy the time over there.

And finally one more picture of Cutler, as we have stored up quite a few over the past few days.  This one is my favorite as Cutler and I were getting some good quality cuddle time together on the air mattress.  It’s almost as good as the mattresses at the W.

Ahhh, the joys of belly time

Ok, actually a few final words.  Somehow I forgot to work this into my past posts, but we got the news back today on Cutler’s spinal tap culture and it was 100% clean with no blasts.  I believe this means at least one week without a spinal tap.  Cutler and cutler’s back thank the chemo for its effectiveness. 

Also, today was a very good day for Cutler.  He spent most of it napping and eating, but wasn’t very fussy at all.  He did pee on Aunt Ellen tonight, so his ornery side is still fully in place.  Right now he is fast asleep and without requiring medicine throughout the night I am hoping for a full night of sleep so that I can be well rested in order to help convince Mason tomorrow that he belongs on his feet during the soccer game.

That’s all for now, Thank You and Good Night.

Had a great dinner tonight with Melanie, Mason, Grandpa, Maude and Vivian at Nate’s where there was some live music.  A very good blues band and Mason has become a efficianado of good music over time.  As soon as dinner was over he went with Melanie to check out the band in person.  Naturally he had to go to the front of the room to stand directly in front of the band and imitate the drummer.  Next thing you know Mason has the tambourine in his hand and is just grooving away to the beat.

It wasn’t a minute into the song and away goes the tambourine and the robot inside starts to break out and Mason is all over the dance floor.  He even did some break dancing spinning on the floor, unfortunately I don’t yet have that on video.

By the time it was over, Mason had the restaurant cheering for him and the band calling him out and he didn’t shy away once.  Perhaps a career in entertaining is right around the corner if the stuntman route doesn’t play out.

My apologies for the video layout.  Not sure how to rotate.  It worked differently on my laptop.  So I suppose you can just turn your head 180 degrees for your true viewing pleasure.

Blood Drive Benefiting Cutler

Tiffany Solis, Cutler’s teacher from North Star Learning Center, has put together a blood drive to benefit Cutler to be held at Canyon Creek Presbyterian Church located at 3901 Northstar Rd in Richardson, between Plano Pkwy and Renner Rd.  This is scheduled for Friday, October 9th from 12:00pm to 4:00pm.  It will take place in room M-204 on the second floor of the church.  I believe that it is prefered to have a time scheduled as only so many people are allowed at one time.  Please contact Tiffany at andrewsmommy28@yahoo.com or by phone at 214-335-3007 for more information.

Also a very special thank you to Tiffany for putting this together and for all of the other wonderful things you have done for us.  For someone that has known us for so little time I am amazed at the effort you are going through for us.  As I said in an email to Tiffany earlier today, it is a shame that something like this had to happen in order for me to see how many wonderful people there are in this world.  It has touched me beyond description and is helping me drive to be a better person.  (Just don’t ask my mom about this, my tone used at home is still on the list of things to improve.  🙂  )  Nothing but good will come of this, including Cutler winning this long and difficult fight.