02/25/13 Update

We all had a wonderful school vacation week. I was really hoping to get one more day with the boys at home today, but the storm was nowhere near what was originally predicted. They had a great time on Saturday night at the UMass Lowell hockey game meeting all of the Star Wars characters.

We have a somewhat busy week coming up. Tomorrow morning Liam is going for an orthodontist consultation….hoping that the situation with his teeth will be something to just watch for a little while an not one where action is needed immediately. Mac has his occupational therapy tomorrow evening, clinic on Wednesday, and then we head back in to Boston on Friday for all of his pre-operation blood work, meet with the neurosurgeon & anesthesia, and another MRI. If all goes well we are still scheduled for surgery on Tuesday, March 12^th.

I have to make a call into the clinic this morning. Mac has been experiencing a lot of stomach pain and vomiting since starting on the new medication, Metformin, last week. I am not sure if this is a usual side effect or something that needs to be addressed. It is heartbreaking to watch him wake up every morning screaming and vomiting into a bucket because of medication that is not meant for children, but is our best hope at the moment of fighting his cancer.

It is sometimes hard to think back about our life “pre-cancer”. So much has changed that has made us better people in some ways but so “abnormal”. We spent our vacation going to so many doctor appointments while I see so many posting about time spent tubing and swimming at various places. I could probably take the boys sledding, but until I have a bubble to put them in my fear far outweighs any fun they may have and public pools are out as long as Mac has his port. Things I would have never thought about before. I know in my head that what we are going through was unavoidable, but all parents know even those things that are out of your control can cause guilt. Guilt over not being able to plan fun outings because of restrictions based on Mac’s health and medication schedule, guilt over not being able to give the boys a more normal childhood, and guilt over not being able to make things better for my boys.

Still waiting to hear from Make-A-Wish about Mac meeting Iron Man/Tony Stark (Robert Downey, Jr). We were hoping to do it before the surgery so that Mac would be feeling good since after surgery we have no way of knowing the effect the new protocol will have on his little body. Since his wish was made back in October and we still have heard nothing it doesn't look like that will happen. We talked to Mac about making another wish and this is all he wants. I am not sure if RDJ will grant the wish or not, but for now we will just sit and wait. I still believe in the good in people and am hoping he either has not gotten Mac's information yet or is just busy.... I would hate to have to boycott Iron Man 3 ; ) I don't know how to get his attention so if anyone has any ideas please let me know!!

I will continue to update as we get closer to the surgery. Thank you all!