Lots of good news

We are home & settled in from our trip to Duke and we have a lot of good news to share. So here it is:

•  Rion will be able to "take a break" (the neuro-oncologists exact words) from chemo after this last round which he will begin Friday. He will take the chemo for 5 days and get lab work done once a week for 4 weeks and then after that he can stop.
• He will continue to have MRI's every 2 months BUT they will be done locally & the disks sent up to Duke for review. We will not have to go back to Duke for 4 months!!
• His MRI was GREAT- "stable to improving" (same doctors exactly words) with no new areas of enhancement and decreased size of the re-sectioning cavity and fluid around the incision.
• We can expect to see improvements in Rion's memory & attention the longer he is off the chemo. Much of what I had read stated that the neurological side effects of chemo are permanent however the doctor said that with Rion's age she does not expect this to be the case. This is such a relief to us as we both find it frustrating how forgetful Rion is and how easily he is distracted when trying to complete a task. We will discuss these issues again in 4 months and if we are still concerned there is a neuro- psychiatrist Rion can meet with for an assessment and to develop a treatment plan
• And our last bit of good news isn't so much about our Duke trip but rather about life AFTER treatment...

Baby Henderson is due April 28,2013!!!

Ready for Duke next week!

Next Tuesday (10/30/12) we will travel to Duke for Rion's *hopefully last for a while* MRI & neuro-oncologist appointments on the 31st. We are extremely optimistic about this trip- no seizures, his white blood cells & platelets are still doing fabulous & the last few MRI's have been progressively better. This trip feels like the conclusion to the past years worth of doubt, confusion, fear, education, hope & perseverance. We are more than ready to have Rion declared "DONE" with active treatment!

The game plan is for Rion to start his LAST round of chemo next Friday 11/2/12- 5 days on & then ??? off. The idea of not having to go to the doctor each week for blood work & not having to anticipate him being sick for a week out of the month is fabulous. It takes 4 phone alarms just to remember all the medication he has to take on "chemo days;" no more of that!

So please keep us in your prayers next Tuesday & Wednesday as we travel and meet with the doctors. While we want to be done with treatment, we want Rion to be declared healthy & stable more than anything!

Blessings,

Emily

Done with chemo 5/6

Rion is done with chemo as of Tuesday & seems to be doing better. This time the side effects hit harder & stronger- he started getting sick Monday morning & was sick Monday, Tuesday & Wednesday. When he woke up very early this morning feeling ill I convinced him to take a Phenergan which either worked  or just knocked him out for a few more hours so he was too zombie-fied to get sick. Either way, I'll take it! His blood work as of Tuesday was still good (to be expected since he had just started 5 days earlier) and he will continue to go each Tuesday for blood work. In an ideal world his levels will start dropping in 2 weeks but be back up by the end of the month so he can take his last cycle starting November 2nd. In reality I am expecting levels to have trouble coming back up as they have with the last few rounds. Seeing as though the side effects did not decrease in response to the lowered dosage I am thinking the white blood cells & platelets (the 2 levels he has had so much trouble with) will probably suffer as well. Someone pointed out to me that the level of toxins from the chemo in his body have probably built up so much over time that any additional toxins will produce worse side effects than they would have in the beginning when we were starting with a "fresh" body. We are still happy that things haven't been any worse, he has been able to get out of bed every day and spend time with me & the puppy dogs; he has eaten at least some little something each day.

Sick Rion : (

After taking much longer than it should have to get the correct dosage of chemo, Rion finally received it in the mail and started it Friday. Unfortunately the nausea/vomiting & fatigue have hit harder & sooner than before- tonight is the last night of chemo but he has been sick for 2 days now. He went for blood work this morning and everything still looks good (as expected) but we anticipate white blood cells and platelets will start declining within the next week or so. I'm so ready for this to all be over. I'm pretty sure Rion's body is just worn out from fighting this poison and every time it gets harder and harder- this would explain why his levels go down further & stay down longer each time. I know chemo is a good thing- and his body is doing what it needs to do to fight off the cancer cells- but it doesn't make it any easier when he's woken up from a dead sleep to vomit : ( I just wish there was more I could do!