February Chemo - Two Trips

2/24/2013:  10:17 PM

Oh my goodness! Where is the time going?  It seems that we are caught up in the routine of life now more than ever before. Let's catch up . . .

Annakate is finally healthy again. It seemed like she was sick forever. 

On Valentine's Day, I took Davis down to St. Louis for his monthly port chemotherapy and a lumbar puncture/spinal of Methotrexate (every three months). He had a bit of a cough and a runny nose, so I wasn't surprised when his oxygen level tested below normal. The doctor checked his lungs, and they appeared clear. I explained that he had been experiencing some arm and leg pain and headaches, which we had contributed to his new exercise system and his apparent cold.  It was then decided that he needed a blood-ox test (a test used to test the amount of oxygen being carried in his red blood cells). The test revealed that he had elevated methemoglobin in his blood.  It is my understanding that methemoglobin is carried in the hemoglobin and does not released oxygen properly into the bloodstream.  Due to his methemoglobinemia (quite a fascinating word) and his cold symptoms, his spinal was cancelled. The anesthesiologists wouldn't sedate him. The medication he takes to prevent lung infections, Dapsone, was the cause of his anemia, so he was taken off of it. He has now been switched back to the Pentamadine breathing treatments to ward off lung infections.

 

 

Davis's cold got the better of him by Saturday, and he spiked a fever.  We ended up in the local ER.  The SBLHC ER takes such great care of us when we are there.  Many of the doctors have children Davis and Annakate's ages, and they are so personable.  Anyway, the doc ordered a CBC and blood cultures to be drawn through Davis's port. The results came back, and no port infection seemed to be evident. Since his ANC was so high, he was given a bag of antiobiotics through his port, and we were sent home. Pretty routine. By Sunday evening, he was feeling much better.

 



 

 

Kyle and Davis headed down to St. Louis on Thursday to beat the storm. Davis had to be at his clinic appointment early in the morning on Friday. The nurse in clinic tested his blood-ox level again, and since it was on the high side of normal, his lumbar puncture was a go. The APC (Ambulatory Procedure Center) was able to work Davis in early, so they work back on the road in no time.

Davis's chemotherapy was increased because his counts have remained consistently high. The doctors wish for his ANC (immune system) to hover around 1000 (healthy kids run 1500 or above), and his tested over 4000 for this month. Although I don't want anything interfering with his treatment plan, I am grateful for the high counts during the flu season.

Kyle spoke to Davis's oncologist about switching over to pills for all of Davis's medication. Currently, with the exception of one medication, all of his meds are liquids or liquid compounds. Some are refrigerated.  A year ago, I couldn't even fathom pills as an option for treatment because, if you remember, Davis could/would not swallow pills.  Goodness, there has been so much change over a year. I am tickled that he can swallow pills now. 

Another notable . . . February 27, 2012 will mark the one-year anniversary of Davis's last hospital stay.  Can you believe it?  When you spend so much time at a place - a second home of sorts - it is hard to imagine anything beyond it, especially in cancer land when life is focused on the day to day. Davis reminded me a couple of weeks ago about the so-called anniversary.  He actually said that he missed the hospital.  I am sure if he was there, he wouldn't.  But I do understand what he means. Everything was certain in the hospital. . . the time for medicine . . .the meals . . . the security of knowing you were being carefully looked after. . . the rotation of the nurses . . . the activities . . .the other children. But with all that certainty, I am more content with being at home.

Davis has started working with a trainer to build some muscle and endurance. He lost so much muscle mass last year. He struggles to have the stamina that other sixth grade boys have. He was ecstatic about starting, but that enthusiasm has wained a bit. Working out is hard work. I am sure he will be thankful for his effort in the long run. 

We continue to keep on keeping.  We never forget how truly blessed we are.  I am amazed at how healthy Davis has remained despite the treatments and sickness that has run amok. I pray over him every night that God keeps a hand of protection on him, and God continues to deliver. Thank you to all of you who pray for our family. It means so much to us. 

We will keep you posted.