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.

The three generations of Fricke boys, minus Cutler unfortunately, were having a pizza night tonight when Papa asked Mason if he wanted a drink of his beer and Mason quickly said that he doesn’t like beer and that he will never drink it.  This reminded me of a few pictures from when he was almost the same age as Cutler is now.  Someday Mason will realize that it is just a genetic thing to like and drink beer…preferably when he is 21 and legal. 😉

Today started off great with Cutler’s platelets increasing on his own without the use of infusion.  Dr Goldman was very excited as we are on day 61 and this normally doesn’t happen until day 80.  To further boost our spirits, Cutler decided to drink non thickened water from the sippy cup as well as he actually drank/sucked on his own from the bottle.  Very big steps to help and another sign from God that he is fully in control of the healing process.  Oh and to finish things off, Cutler ate quite a few pieces of apples and half of a chicken stick. 

 He also continues to accept the continued increased in flow of formula.  At the current pace, the Dr. thinks that Tuesday may be feasible, but I refuse to set my sights on any day for release until he is in my car and we are driving away from the hospital.  As for me, the good doctor has quarantined me from the hospital for the present time.  Each morning we ask the doctor and so we will take my visits to the hospital in stride waiting for permission.  Until then I will enjoy the following pictures along with everyone else as my way of seeing him.  I am amazed at how quickly his hair is growing back.  You can see a big difference as each day goes.

Here are a few videos from Mason’s successful test for his orange strip on his yellow belt from last night. 

Mason is really enjoying karate and this was his first trip to the actual karate school as all of his classes to date have been at his montessori school.  Based on Mason’s reaction to the actual school, I think we will be taking him there for some extra work as he would not stop telling me how much he likes it.  I only wish he would kick the soccer ball as hard as he kicks the pads.

Today went very well, aside from me not being able to see Cutler that is.  First things first, the results of the phish test came back and showed that there is no leukemia cells within his current system.  This is great news and the test was run because of the results of the test that determined the amount of cells coming from the different marrows.  This was a huge relief for us and excellent news to receive after a few days of frustration.

Positive news number 2, is that Cutler has now gone over 36 hours without digestion issues and they have increased the volume from 20 ml to 22 ml and will increase slightly every 12 hours as long as there are no issues.  Dr. Goldman has said that once he can handle 40 ml over a 12 hour period, we can have our baby boy back home.  I don’t want to set any timelines, but they are thinking middle to end of next week.

More positive news is that Cutler actually drank an ounce of thickened water from the sippy cup today as well as ate some diced apples!  Cutler was even getting upset whenever the cup was taken away from him, so this is a huge step and while he does require a squeeze of the cup from one of us to get the liquids, it is incredible that he is actually drinking from it and more importantly wanting to drink from it. 

The only negative on the day is that I have a stomach virus of some sort.  Last night my fever got up to around 100 and I went to the doctor first thing this morning and was pretty much told there isn’t much to do, but to let it run its course and naturally to stay away from the hospital.  Fortunately my fever has been gone since about 9 am and I am feeling much better, so I should hopefully be able to get back up to see Cutler by tomorrow night.  The timing sucks as Melanie is out of town, but fortunately my parents came in town and just the right time and so Aunt Pat put in an extra long shift during the day and my mom is sacrificing her back to spend the night for me.  I actually think she might be doing it just to get away from dad’s snoring, but we will stick with her selfless sacrifice for now.  🙂

Sorry for no photos of Cutler, but hopefully I can get some up tomorrow.

This morning Cutler was switched to yet another formula, one that should require very little digestion and the gastro doctor wanted to keep him at 20ml on the new formula for 24 hours.  So far, so good.  Cutler has not fussed at all and even better has not vomited.  Dr Goldman also started him on some medicine that should stimulate his appetite.  Waiting to see how it works and continuing to work with him on eating solids and we are now almost to the point of abandoning the bottle and working only on the sippy cup.

As for our frustration, the Dr did remind us that the TPN does go through the liver and so there is more stress on the body by sticking with the TPN.  This has helped us accept our decision to go with the feeding tube and we are back to accepting our fate and working with what we have.  No more complaining…until the next day we feel down.  🙂

My mom and dad are back in town, and it couldn’t come at a better time as Melanie is flying out tomorrow and I am starting to come down with yet another cold.  It’s my fault, as Melanie keeps reminding me, since I haven’t been taking my vitamins.  No more reminders for me as I am all over them and even eating a ton of oranges.  

Aunt Pat and mom are having fun hanging at the hospital now and helping out where they can and even knocking a few hours of Barbara’s schedule away from her.  Dad got to spend some time with him this morning as well and he says that Cutler seems a bit confused to hear my voice, but to see the old man.

Mason successfully tested for his first orange strip on his yellow belt in jiu jitsu today and we have some really cute video that I will work on posting tomorrow.

And not because my mom and dad just came into town.  But because we continue to have issues with the feeding tube.  Cutler made it through the night two nights ago and all the way into last evening before vomiting.  The rate is still below 30, well below the target of 60.  Independently, Melanie and I have both been wondering if we made the wrong choice with the feeding tube.  If we had decided to just stick with the TPN we could have had him home by now and instead we are in the same situation we were before, only we have now another hole in our baby boy.  I am sure in the long run this was the right decision, but it is frustrating to see a lack of progress and in fact perhaps a bit of digression.

Haven’t heard from Melanie on how last night went, but will try to get another update shortly.  We are going to express our concerns about the tube to the doctor, so maybe we can figure something out that gets us all home together soon.

Cutler is still in the hospital and still having issues keeping down the formula, but having no issues spending time with his big brother.  Today we got permission to bring Mason up here and so we had a family pizza night together in our tiny little room.  When I first told Mason after church today that he could go in the room to see Cutler I thought I had seen the biggest smile I had ever seen…that is until I saw the smiles on both of them when Mason walked into the room.  Cutler lit up like I have never seen before and would not take his eyes or hands off of Mason.  Everything Mason did, would make Cutler laugh…even him coughing. 

He hasn’t had the best past couple of days as we are constantly trying to increase the dosage of the formula and every time we think we are taking steps forward he ends up vomiting.  We need to be at 90ml per hour, I think I originally said 60, but as it turns out I heard wrong.  The highest we have been is up to 30 and we are currently running at only 20 to see how he does with a new formula that is supposed to be easier to digest.  Based on our issues, it doesn’t look like he will be home tomorrow, but we are hoping for Tuesday as Melanie is flying out on Wednesday for a work trip to New York until Friday, but we will take him coming home any time we can get it.

I am hoping that Mason’s visit may have lifted Cutler’s spirits so that he will start to tolerate everything much better.  As you will see in the videos below, even the nurses got a kick out of seeing the two of them together and they all commented on how much of a lift it appeared to give Cutler.  It’s amazing how much he looks up to his big brother and how loving and calm Mason is with him in return.  Mason was even sad when he was leaving, so I am thinking we may just bring him up here every day after school to help keep Cutler laughing and in good spirits.

Here are a few videos from the visit as well as some photos.

Over the past several months I have been amazed how much everyone, including strangers to Melanie and I, have reached out and offered/provided support to us in many different ways.  We continue to get asked what we need or what can be done to help out, well here is a way:

A colleague of Melanie’s from Frito Lay, Ginger Rogers, has joined up with Team In Training for the 2nd time, and is training to participate in the Rock & Roll San Diego Marathon this June.  For those that aren’t aware, Team In Training raises funds to help stop leukemia, lymphoma, Hodgkin lymphoma and myeloma from taking more lives. Ginger has graciously offered to run the marathon in honor of Cutler.

Please check out her website at http://pages.teamintraining.org/ntx/rnr10/gingerrogers if you would like to learn more about how you could donate to her efforts or just to check in often and track her progress.

We are working with Ginger to become as involved as possible and to help support the team by including Cutler in the Honored Heroes program that we are still learning more about.  Naturally we will provide updates on that as we learn more, but please check out Ginger’s efforts and support her effort to raise money and awareness in any way possible.

And a fresh attitude to fight comes along with it.  Today has been an up and down day for Cutler as we try to get his stomach adjusted to having food in it.  From what I understand, the objective is to have the pump up to 50 ml per hour before he can head home and we can’t get to 20 ml per hour without him vomiting. 

So far he has had three big vomiting sessions today and leading up to the vomit, he is in tremendous pain crying out like I have rarely seen from him.  However once he vomits, he is usually happy go lucky and the pain is gone.  After the last episode, we turned the pump down to 10 ml per hour and at midnight, when he gets more medicine to help with the nausea, they will bump it up to 15 ml and then we will keep increasing by 5 ml every four hours to see how he goes. 

Based on today, I find it highly unlikely that he will get home tomorrow, but that’s alright as we want him home only when he is ready to come home.  Dr. Ghisoli is doing everything he can to get him home, but I did warn him that once he gets home the house calls (reminder: he lives right around the corner from us) will soon start and he said that as long as there is beer we should be good.  🙂  Now that’s a health plan the congress should look into passing.

By the way, thank you to everyone for their thoughts, prayers, comments, and reaching out to me.  I would like to be as positive as possible at all times,  but I also want this blog to truly represent what we are experiencing so that we can use it against Cutler when he starts to give us grief in his teens.  🙂