Friday, August 24, 2012

Bye Bye Steroids...

Wed was the last day of Nevan's Steroid based Chemotherapy... YAY!!  These mood swings were feeling like they were never going to end!  It does take a few days for the steroids to clear themselves from his system, but soon we should see an improvement in his attitude as well as a break on the insane cravings for Mr Noodle packages! 

That morning we headed in to clinic for what we thought was going to be Day 32... our final day of the induction phase.  We were supposed to get a fingerpoke and then be admitted over night for sedation the next day so Nevan could have his High dose of Chemo, lumbar puncture and Bone Marrow Biopsy.  We got through the finger poke, but when Nevan's counts came back, Judy, his clinic nurse let us know that they were too low to proceed with Chemo tomorrow.  He has developed a cough and his neutrophils (immunity) counts are too low to get him through such a high dose of chemo, so we were sent home.  His RBC and his Platelettes however were looking good... so it is just a matter of time that his body will make some more neutrophils as well.

Well it is Friday morning and we just woke up at the hospital! What happened you ask? My baby boy's Bone Marrow has kicked in, that's what happened!!  Miraculously Nevan's phagocyte count has spiked to 2.4.... Never has it been over 0.1!  This is a good indication that Nevan is in remission, but the results from the bone marrow biopsy he had yesterday will tell us for sure.  The next course of action is high dose methotrexate. This is the tough one... Increased mouth sores, vomiting, headaches. Nevan will remain in the hospital until he has passed all the drug through his system. Anything left or not passed could severely damage his kidneys. This means we will be at the hospital anywhere between 48 hrs to 1 week. So far I can definitely tell that the steroids are wearing off and Nevan's smiles are increasing immensely....  I needed those smiles!  Unfortunately we are starting another course of higher dose steroids soon. They may not have the same side effects so we will have to wait and see.

Along with the bone marrow biopsy yesterday, Nevan also had intra-thecal chemo, a new NG tube put in and a dressing change for his PICC line.  They had to put special bandages around his PICC line this time because the type of tape that has held it in place up until now along with the many changes has caused his skin to become raw and thin and at next change would likely have pulled off his skin in the process.  With his neutrophil count higher now, we can request the insertion of a more permanent port put I to his chest. This will sit under the skin and once healed, will have no dressing changes. They will access the port each time using numbing cream for his skin and it will administer his meds right above his heart as needed. With the protection of his skin, he will also be able to take a regular bath and maybe even go for a swim next summer!

Well, it is around 10am and I am just waiting for his Dr to come in and let us know the test results of the bone marrow biopsy. Stay tuned.....


Cute story of the day:
Nylah speak!!

"wawa" = Nevan
"Norwalk Ally" = Margaret Ellen (her teacher at daycare)
"Bus wound and wound" = Wheels on the bus
"Dinky Dinky tootsies" = Skinamarinky Dinky Dink with my feet
"No Mucousy!" = no Music.... Doesn't like the radio on in the car


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