Cutler is still running the occasional fever and some vomiting, bit otherwise is in pretty good spirits. Photos of Mason will be posted later.

Today was much like yesterday, all sleep and cuddle, except he did wake up for about 40 minutes of play time with dear old dad.  His fever continues to spike from normal to the 103 range, but just 30 minutes ago he spiked to 104.5.  Fortunately it took only about 40 minutes to get it back down and he is now comfortably sleeping in his non PICU crib at a balmy 99.6 temperature.

That’s right, Cutler has been brought back to the friendly confines of the 6th floor.  The doctor’s decided now that his blood pressure has been good for the past two days it would be alright to move back to our home away from home.  That is exactly how it felt as we walked back to our penthouse as the nurses and PCAs all welcomed us with cheerful smiles.  Poor Nagala, one of our first PCAs, hadn’t seen Cutler since his previous stay and so she had never really seen him “sick” or at least at the level he currently is where he wouldn’t smile and would barely open his eyes. 

Tonight I was talking to Angela, one of the night oncology nurses about how great the PICU staff was but it just wasn’t the same and she simply said, “That’s because were family here.”  I don’t think anyone could have said it better.  If we can’t be at home, then this is where I would want to be where I trust the staff implicitly to watch over and care for our precious baby Cutler.

Talked to Dr Weinthal again about Cutler’s condition and he reassured me that while this is serious, it is exactly what they expected to see and is confident that they are treating it correctly.  He also mentioned that the cultures have seen that the strep is no longer growing so we definitely have it stopped.  Now it is just a matter of Cutler’s white cells being created and swooping in to clean it out.  Once his fever stops spiking, I will feel mor comfortable in upgrading us to Yellow, but for now I think we are hazy shade of orange as we were at least able to move back to the penthouse.  Thank you everyone for their continued prayers and support.

Cutler is still in the PICU and still running a fever.  He isn’t doing much other than sleeping and complaining whenever you try to move to make any type of adjustment.  He is definitely not himself, but the required holding time does allow us to cuddle with him as long as we like.

Dr Weinthal has informed us that the staff infection is not an issue and that all he has right now is strep.  It is something that we all walk around with, but we have the ability to fight it off as we have white blood cells and his are virtually zero.  He said that while this is very serious, it is pretty much what they expected and so he is not surprised.  He expects that Cutler will need to be hospitalized for the next two weeks, but hopefully out of the PICU within a few days.  Because Cutler is not drinking much and still vomiting, it looks like he will start to receive protein intravenously.  That being said, Melanie fed him a few ounces two hours ago and as of right now everything is still inside of him.

We have officially moved to the PICU as Cutler’s infection continues to make things difficult.  His fever is bouncing from normal to a high of 102.5 today.  At one point this morning, while Melanie and I were both working from home, grandma called and said the doctors were concerned and needed to move him to the PICU.  30 minutes later I was meeting them as they arrived and Cutler was in pretty bad shape.  His fever was high, he was vomiting, and his blood pressure was low.  They gave him blood and it wasn’t 30 minutes later while lying in my arms he sat up almost on his own and started to play for at least an hour.  It was an amazing site of strength and will power.  The doctors and nurses were amazed and the quick turn around.

Unfortunately, that did not last for too long as the fever returned and he quickly returned to fitful sleep in my arms.  Any time the fever is up, he just wants to be held and throws an amazing fit even when you set him down just long enough to be changed.  Dr. Weinthal did come by and the cultures are showing that he has strep throat and a touch of a staff infection.  He also thinks there is potential for pneumonia, but without white cells it can’t be determined.  So the next 48 hours or so are going to be pretty rough as we fight to get the infections under control.  For now we will just continue to hold and comfort him until the project is moved back to yellow and then eventually green status.

So Cutler is back in the hospital.  After a successful Sunday of no vomiting, Cutler woke with a fever around 6:30 am and started to vomit.  We were in the hospital by 9:30 and the fun had just begun.  Cutler was quickly put on antibiotics and was given platelets as they were very low.  Prior to being put on the platelets he coughed up some blood, but the doctor says that the platelets would resolve this by allowing the blood to clot. 

When they started the platelets his temperature was back to normal and within ten minutes his fever had shot to 104.9.  This is where the day really turned scary for us.  I had never seen a fever this high and so inside I started to freak a bit, but we quickly undressed him and started to apply cold compresses all over.  This helped bring the fever down and at the same time helped bring our panic level down. 

Eventually over the next hour or so his temperature did return to normal and at one time was even back to his playful self.  While blood cultures are underway, we won’t know for sure what type of infection he has until possibly tomorrow, but the doctor explained that this is definitely something to be expected and that he has some of the strongest antibiotics possibly running through his system.  It will just take longer than normal to fight off the infection because in the end it is the white cells that have to kill the infection and thanks to chemo Cutler’s white cells are very low, fortunately they were at 800 when the doctor was expecting them to be around zero.  He did say to expect the fever to continue to spike over the next several days until this is resolved, so we will be full of anxiety and stress until this is resolved.

Melanie is spending the night with him and just called to let me know that after keeping a few bottles down his fever is back up to 101 and he just vomited a bit more.  However she was able to get him back to sleep, so let’s hope for a good night of sleep for both as he needs his energy to fight this infection.

Unfortunately in all of this we didn’t get a chance to talk to the doctor about next steps and understandably so as we need to focus on the current before worrying about the future.  One day at a time right now.

So grandma worked hard trimming the rose bushes and pulling the darn St. Augustine grass invading my beautiful Bermuda while Tau supervised and kept very close track of her water breaks.

Grandma Hard At Work

I chose to relax on the couch with Cutler and catch some football.  What a great day indeed.  Aside from the weather, it was also a great day as it was the first that Cutler did not have any trouble keeping his milk and cereal down.  We even accomplished this while weaning him off his nausea medicine.  So all things are going good and you could definitely see a difference in Cutler today.  He was full of energy and desire to play.  So much so that he fought every effort for a nap.

This weekend was the first time in a while that we actually worked like a full family.  It was so nice to have Cutler home and wake up on Saturday morning to both boys.  We got a bit daring and took Cutler to Mason’s soccer game where we were very careful to keep any interlopers away so that it would be just like the daily walks he takes with his mom.  This morning was even better considering there was no vomit and the boys actually played together quite a bit, including the previously mentioned moment from my earlier post. 

This afternoon they swung together out back as we watched grandma finish up her work and then they proceeded to lay down together for some play time inside.  This is where we got our first taste of a multi child family…Cutler made Mason cry!  I knew it was going to happen some time, but not just seven months in.  As they were playing on the floor Cutler decided to pull one of his favorite moves and started to pull Mason’s hair.  At first it was all fun and games, but then as it continued on and I continued to laugh, it quickly became less funny to Mason which quickly lead to tears and hurt feelings.  I suppose some of it can be blamed on me and my laughter, but I will forget about that portion for now.  However, have no fear, the boys quickly made up and Mason was back to entertaining him and the house is overflowing with love.

Tomorrow morning is Cutler’s appointment for his first blood test since leaving the hospital and so we hope to learn a lot more about next steps as well as the path to a cord blood transplant.  Will post sometime tomorrow once we learn more.  In the interim, here are a few pictures and a video from the family fun of today.

Swingin away

Loving kisses

Even Mason thought it was funny at first

The Bros

The picture above is from July, but I witnessed something this morning that made me think this was a perfect picture…aside from Cutler not smiling.  While having breakfast with Melanie I looked over and watched as Mason was playing with Cutler.  It tugged at my heart-strings to watch Mason just sit there for a few minutes and tickle, make funny faces, make noises, and so on in order to entertain his baby brother.  The ultimate was when he leaned in and gave him a big hug and then a kiss on the cheek.  Just to watch Mason do this without him knowing we were watching was really moving, but then to watch Cutler just look deep into Mason’s eyes with the biggest smile on his face was absolutely amazing.  Sometimes I wondered if Mason gave his Cutler yell when he entered into the room just because he enjoyed our reactions, but this just further proved to me that true love he has for Cutler.  If only I had a camera constantly rolling.  Perhaps it is time to install 24 hour surveillance.  🙂

He Laughs At Pain

I realize that parents often marvel at the smallest things for their own kids and think that they are best, but this time I apologize to all parents because Mason is by far the bravest four year old that I have experienced.  Yesterday we took Mason into the doctor’s office to have blood drawn in order to be tested for a bone marrow match.  A few weeks ago when I discussed this with Mason he told me that he wanted to sit up and watch because it would only hurt for a little bit.  I thought this was just a lot of talk and when it would come time we would be strapping him down like a mental patient in order to draw blood.  I was wrong.  Mason sat very strongly in my lap and watched as they inserted the needle and was in amazement as he watched the vile fill with his blood.  I asked him if it scared him and he said “No, it’s pretty cool”.  Not one tear dropped from his eyes and it is one of the proudest moments I have experienced.  He gave blood easier than a lot of adults I know.  Now, if he could only take that attitude to the soccer games we might have better stories to tell after the games.  🙂

As a reward we took Mason ice skating for the very first time.  The first couple laps were not very smooth, but after a few times around and the can do attitude that his mom has instilled in him you could definitely see dramatic improvement.  Of course we still had to hold his hands (e.g. hold him up), but each pass required less and less effort on our part.  He now wants to take lessons so he can play hockey.  Hopefully he keeps that attitude and doesn’t change it to figure skating as he enjoyed watching the girls that were practicing.  Here is a short video of his efforts during the second pass through…

I apologize again for the layout of the video, unfortunately anything taken from on my iphone is rotated for some reason.  WordPress assuress me that they are working on a resolution for this.

Now, for the negative news about Mason’s donor potential.  We did hear back from the doctor today and Mason is not a match.  As disappointing as this is, things are still good as we still have a very high probability of finding a cord blood match via the cord blood bank.  We have also heard some potential of using his current healthy bone marrow, but I don’t know much about that at this time.  We will be in the office on Monday for more blood work for Cutler and hope to get more news at the time.  One request that I have of everyone is that you please never mention this to Mason.  I am sure it goes without saying, but we really don’t ever want him to know that he is not a match.  That can wait until he is much older when he understands these things.  In the mean time, as far as he is concerned, the doctors took his blood to help Cutler. 

Again, this news is not what we had hoped for, but with only a 25% chance of Mason being a match it is what was expected.  Up until this point, everything has gone our way, so we need to expect to have some road blocks in the way, but they are only road blocks and ones that can be removed.  We still have the cord blood solution and more importantly we still have a baby that is in remission and who loves his big brother very much.  Below is a video of Mason coming home from school to find his baby brother home from the hospital.

We thank everyone for staying positive and for their continued thoughts and prayers.

Still Happy

So Cutler is adjusting to the home life quite well from an entertainment perspective.  He loves to play in his exersaucer and to roll around on the floor.  He has become quite adept at rolling all over and is doing a pretty good job of sitting up on his own.  However, his best trick of all is his ability to pull his socks off with his teeth and then keep it there for display purposes.  I believe that if our socks were available he would probably chew on these as well.  He is actually worse than the dog.

Doggy Cutler

Unfortunately in between his play time and feedings, Cutler is still getting sick. You can tell when he is feeling it, but as soon as he vomits he is usually back to his fun-loving self. The doctor today called in a script for a new medicine to help with this and so far it is working. He has successfully stomached three feedings since first taking the medicine. Let’s hope this round of medicine works. If not, he will most likely head back into the hospital. While he definitely misses all of his lady friends there, he prefers it at home.

Kammie Makes The Blog Again

Code Pink Is Always on Belinda's mind

Speaking of the hospital, we have received some conflicting information about a potential transplant.  Three of the four doctors had mentioned this would likely be Cutler’s last round of chemo before the potential transplant, but then when we were in the office for Mason’s blood test (more on that in another post) Dr. Goldman mentioned that we still had another round to go.  I am sure they are combining their brain power and will ultimately make the best decision for him and we hope to hear more on Monday when we go in for more blood work for Cutler.  Until then we just continue to hope for the best and pray that Cutler continues his strong recovery.