Up Goes the Chemo

All around the clinic
The nurse chased the patient
The finger poke revealed it was time
UP! goes the chemo......

Sometimes I feel like I'm living in some sort of bad nursery rhyme - the horrible aspect of cancer mixing with a simple children's song and you find yourself thinking it's funny.  You have to think it's funny because the only other choice is to cry......

We had a clinic visit yesterday.  The chase mentioned above only occurred when Carson realized he'd be getting a flu shot along with the finger poke.

Counts are lower than before, but remain elevated.  Since Carson appears to be doing fabulous health wise - as in cough, congestion, ear infection are gone- the doctor made the decision to raise his 6MP and MTX dosages.

We will go back to the clinic on October 15th.  3 whole weeks.

Of special note is that on October 15, Carson will be receiving his last spinal tap of the protocol!!!  That means it could be his last spinal tap EVER!  That is just too weird for me to even think about right now.  I know we've been doing this for over 3 years, but it seems like we've been doing it forever.  And to just stop doing it one day, that blows my mind and scares me to death.

In other news, I am healing fine.  I have a follow up appointment with the plastic surgeon on Thursday and hope to have this horrible tape removed; at which point I am hoping to get on with a life without surgery!

Paul is working very hard and planning several trips overseas.  Francesca has returned to her busy swimming schedule and seems to love 9th grade.

Enjoy your week!  Now that we have clinic out of the way, we are looking forward to doing the same!

-Jennifer

Chemo restarted/ ER revisited

As it turned out, it was time to restart chemo last Monday.  Carson's counts had recovered to decent levels so 6MP and methotrexate began again, but at half dosage. 

A few days later we got a call from the clinic.  Carson's IGG level was still low - big surprise - and he would be receiving that the following Monday during his regularly scheduled chemo appointment.

Fast forward to Friday, Carson starts to complain of his ear hurting.  On Saturday, we'd progressed to a low grade fever.  By Sunday afternoon we were in the ER with a 101 temp.

Counts were really high though (almost 9,000 ANC), so we got our antibiotics and left.

That brings us to today.  After a meeting at Francesca's school to write up a 504 plan for her, we had a semi-marathon clinic visit that we haven't seen in awhile.....IV antibiotics x 2 (rocephin and pentamadine), Vincristine push plus an IGG infusion.  Add to that the start of steroids, the weekly methotrexate dose and the beginning of an oral antibiotic round and we've got one juiced up little guy!

Will it be enough to get him well and back at school?  We will find out in due time.
 
-Jennifer

First Day of School/Clinic

It was a little bit late, but Carson made it for HIS first day of school today.

We decided to let him keep the red mohawk.  I haven't heard anything from the school yet.

Later this afternoon, Carson will go for a counts check at the clinic.  We suspect it will be time to restart chemo.

In other news, my latest surgery went fine.  I am sore, but able to get around and not in too much pain. I'll be good as new in a few weeks.

-Jennifer

Home!

We are home!

It feels good!

Reaction

Carson had a reaction to the IV IG, which began at 10 last night.  We were up until about 2 AM when it was all said and done.  The reaction was not as bad as the one he had about two years ago, but it still wasn't pleasant.  It came with a fever spike, uncontrollable shaking, feeling cold and crying, but lacked the paranoia, hallucinations and thinking Mommy was someone else.

So, it is Tuesday and we are still in the hospital.  The new plan is to continue antibiotics and stay until the fever breaks.  His counts are up (ANC of 1270) and his blood cultures remain negative.

In other news, today was the first day of school.  Here is how Francesca looked on her first day of high school....

 

And here is what Carson looked like..........obviously he didn't go to school.  Maybe next week.

 

Still In

It is Monday evening and we find ourselves still in the hospital. Carson's fever continues and the IGG infusion that was scheduled cannot be done until the fever comes down some.   Despite the fever, Carson continues to play with Legos and have fun.

He got to leave the room for the first time since Saturday to travel downstairs for a chest X-ray,  that turned out all clear, by the way, despite a very congested cough that continues along with the fever. 

Tomorrow we will try again for the infusion. You may remember that IGG infusions here at the hospital require about 20 hours because they must infuse their particular IGG brand at such a slow rate - or risk bad reactions like shakes, blotchy skin, hallucinations and paranoia from Carson.    So, even if we start the infusion tomorrow, we are looking at another night in the hospital and Carson missing at least the first two days of school. 

We shall see how all progresses tonight and tomorrow. 

I am scheduled for surgery on Friday, so we do hope to be out by then!

More later.....

Hospital Return

I was going to do a blog about all of our cool summer activities - and most importantly about Carson's Make A Wish trip to Legoland. Instead, Carson is in the hospital.  He was admitted yesterday, the day after we returned from Florida, with fever and low ANC.

He is feeling pretty good when the Tylenol kicks in and he has Legos (the ones we purchased at Legoland) to distract him.

We'll keep you posted.....