Grandma and Papa left today to drive back home for some much needed r&r for grandma.  The past few days papa has been talking some serious trash about how good he really is on a scooter and Mason quickly put that trash talk to rest this morning before their departure.  Mason was so confident that he even did it in his boxers.

Apologies again for the layout of the video.  Hoping to see a fix from wordpress soon.

It’s been a few days since the last post, but we have continued progress.  Cutler’s fever is now being controlled by Tylenol and is no longer spiking as high as previously.  He is still experiencing nausea, but with medicine he is able to keep more milk down.  Sally.  However, that being said he isn’t drinking nearly as much or as often as he was. Is. His mouth is filled with sores and I would guess that his throat is sore as well.  Great.  Thus decreasing his desire to drink, but fear not he is on a TPN drip as well as lipids.  I know, Aaron please stop using big words.  TPN is the nutrition and the lipids are basically the good fats that he requires.

His blood counts continue to improve daily and you can see his spirits changing in pace with his blood improvements.  His white cells are now coming back and joining in on the fight and perhaps in a day or two the nurses will not longer need to gown, glove, AND mask.  (  <— answer to previous post)  Once the fever is gone I will feel comfortable moving us to Yellow.  For now, he does still have flashes of his old playful self, including at 3:30 am when he suddenly loses the fever and the anti nausea medicine kicks in. 

Some other great news, not to hide it in this post, but we did find a cord blood match!  A perfect six point match.  Dr. Weinthal said that looking at the blood alone you might think they were twins.  This was extra special news to receive over the weekend that really put some much-needed pep in our step as we began to celebrate Halloween with our little pumpkin hanging in the hospital with Grandma and Papa.  Not sure of any timelines yet and we still have to figure out where this is going to happen. 

Our current insurance, Aetna, is requiring the transplant to occur at one of their “Centers of Excellence”.  Unfortunately our hospital is not recognized as this, but there is one in Ft. Worth.  However, our doctors have reached out to Aetna to see if there is something that can be worked out to be able to keep Cutler with his extended family instead of introducing a whole new staff into the fold and requiring us to commute to Ft. Worth for the next several months.

We also had an action packed weekend with Mason’s last soccer game and a great Halloween tradition pushing through its second year.  Will try to get something out about that later this evening.  Until then, below is the after picture from above.  🙂

Please gown and glove up before sneezing freely in the room.  🙂

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.  🙂