Missing Mason

The title of the post is how the doctor refers to Cutler.  Apparently he is reacting well if he keeps eating at this pace and continues to amaze the doctors.  While he does still vomit at least twice a day, he does still show the desire to eat which is a very good thing.  It does seem like it is only happening with his first two or three bottles of the day and we are trying to get him anti nausea medicine prior to giving him a bottle.  Helps keep the laundry bill low.  Regardless of the nausea, he is still drinking a lot of milk and is continuing to enjoy the vegetables which is a very good thing.  Right now he is maintaining his weight, around 16 lbs, but as the chemo is almost over I suspect his current appetite will start to pack more weight on as soon as he keeps it all in on a consistent basis.  And sorry Aunt Linda, but I have a feeling he will continue down the trail of the carnivores in the family.  After all, you don’t keep a body like this by not eating meat.  🙂

I vomit, but I don't care

Cutler may be in remission, but this second round of chemo is really hitting him hard physically, but not mentally.  I had the pleasure of being the recepient of two episodes within 30 minutes.  Personally, I blame it on Kammie, as he only seems to have these issues when she is covering him but she claims that she only makes him laugh.  Apparently he laughs so hard that he pukes.  🙂  Actually, if it weren’t for the vomiting and the hair loss, it’s the same story as before where you wouldn’t even know he was going through chemo.  He continues to be the happiest baby around and continues to amaze me with how talkative he is throughout the day.  Oh another milestone for Cutler is that he is now eating vegetables and for the most part loving every bit of them.

Also thought I would throw in a random picture of Mason as it has been awhile and I don’t want him to be left out as well as including one of the only family member not to make it on here until now…Tau, our well behaved protector of the house.

Tau and Mason before a round of golf

Here you can see where Cutler get’s his happy attitude and loving smile.

Laughing boy

First of all, my apologies for not being very active of late, but there just hasn’t been many updates to provide and I also needed a mini vacation.   But now we definitely have something to update everyone with…Cutler is now officially in remission!  We got the word last night/this morning from the doctor that the bone marrow shows no signs of cancer and the spinal fluid is clean with no blasts present.  The blood work also continues to come back clean.  Cutler is so happy that he is now singing about it…

Obviously this is tremendous news and a major step towards the cure as we will most likely move on to a potential transplant once this next round of chemo is complete.  So while it is time to be amazed and overwhelmed with this good news, we must still keep the prayers pushing forward for the cure.  We had to cancel Mason’s scheduled blood test due to his illness, but he is finally without fever and the cough has reduced so we hope to have the test done at the beginning of next week.  As for Mason’s health, he is heading back to school tomorrow and let’s hope this is the last of the gunk that is going around not just for Mason, but also for all of his classmates as this nasty h1n1 works its way through the system.

So Cutler is now back in the hospital and as much as we hate to be back it was great to get such a good reception from the incredible staff.  We didn’t get the same presidential suite, but no complaints as we hope to be there for only eight days…long enough to finish out the chemo.  The bone marrow biopsy and spinal tap went well and the doctor liked what he saw under the microscope, but we will wait until we hear more hopefully tomorrow after all of the thorough testing is complete.  Cutler did vomit a couple of times today, but otherwise is doing well and the second round of chemo is under way.

Mason did go back to the doctor today as his fever and coughing continued today.  Fortunately the doctor feels he has a viral cold and not h1n1, which is a good thing and amazing considering that his fiance, Taylor Carley, just got diagnosed with it as well.  Sounds like there are quite a few kids out sick from his class.  I think we will keep Mason at home safe with the grandmas for at least the rest of the week while he finishes out his tamiflu prescription.

Aunt Angie

Mason is still sick and Cutler is still avoiding the bug, so not much new.  Mason did have a great first half of the day, but around 2 he started to spike a pretty big fever and soon lost interest in hanging out with anyone, even his daddy.  He did get to enjoy the NickToons marathon of Fantastic Four and IronMan, so not all was lost on him.  By the evening he was a bit back to normal, but still coughing quite a bit.  If the cough persists tomorrow, the grandmas will take him to see the doctor for more medicine while Cutler is undergoing his procedures and starting chemo.

I feel bad that I forgot to mention this before, but 27 people showed to donate blood at the blood drive for Cutler on Friday which is amazing.  Again, a very special thank you to Tiffany Solis for putting this together. 

Another special thanks to Cajun Aunt Pat for all of the wonderful cajun food she cooked up and sent to us with Nana.  I can never get enough of her home cooking.

Life is exercising a no holds barred attack on Team Fricke and we are feeling the full effects.  Before anyone panics, Cutler is doing just fine.  He is sleeping through the night and not running a fever so far.  Instead life has decided to take us on in other areas, most importantly Mason.  It started Friday afternoon when we got a call from the school to let us know that one of Mason’s classmates was diagnosed with H1N1.  To be safe we have done our best to keep Mason away from Cutler or at the very least limited his touches and made sure he was always washing his hands before touching Culter. 

Yesterday started out good and Mason showed no signs of any illness as he gulped down a pretty big breakfast and then played the entire soccer game.  It was about 6pm last night when he started to show some fatigue, coughing and signs of a fever.  We immediately moved him upstairs and put him in quarantine.  His fever spiked off and on throughout the night and then he woke up at 4:30 am crying about his back hurting and so I quickly took him to the ER.  The good thing is that the swab tested negative for the flu, but given the circumstances at home and the symptoms he is presenting he is taking medicine as if he does have the flu. 

Mason and I are remaining in quarantine as Melanie, Nana, Aunt Angie, and Grandma are taking care of Cutler.  Unfortunately Aunt Angie had to fly back tonight, but it was great having her here for the few days and her skills and knowledge as a nurse were invaluable while I was freaking out about Mason.  One good side to being in quarantine is that I have finally had an excuse to sit around and watch football all day and Mason has been willing to let me watch.

Most of the day he has done great.  When we got back from the ER he proceeded to have yet another big breakfast and even a big lunch.  About an hour ago he started to show the symptoms again as he began to warm up and his chest congestion appears to be back.  He is so tired that he actually asked me to turn off Bolt so that he could go to sleep.  Let’s hope the rest helps and he will be feeling better when he wakes.  I do suspect this will postpone his blood test, but there is plenty of time to get that under way.

Just got done at the doctor’s office and his blood work looks incredible, so good in fact he is ready to start chemo again next week.  His spinal fluid came back with a zero count as well and after reviewing under the microscope there was one cell that was questionable, but couldn’t be specifically designated as Leukemia.  This is an upgrade from last week when they defined one cell as Leukemia so we are heading in the right direction.  So now the plan going forward is that we will have the weekend at home together, Mason will have his blood test on Monday, and then on Tuesday morning we will go in for a bone marrow biopsy and another spinal tap and then be admitted into the hospital for eight days of chemotherapy.  The doctor has said that we will be heading home as soon as the chemo is complete so the recovery will be at home this time instead of at the hospital.  I am sure this will disappoint the nurses, but will make the team very happy.

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.