Matt and I left for SLC this morning and had a great drive. He kept saying, "Mom, the only thing I love about visiting the hospital so often is this beautiful drive." I agree that the canyon is lovely, not so much about the construction in Ogden! Midway there he began asking if we could go to Kentucky Fried Chicken. Apparently fried chicken was a craving - and as a mom I felt obligated to indulge it. We stopped for lunch and then arrived at Primary Children's a little bit early. The parking lot was an absolute zoo and we had to drive around for 15 minutes before we found a spot! I was worried that our day was going to be l-o-n-g since there were so many people there. However, we got checked in right away and there was NO one in the waiting room for CT Scan/MRI! We checked in and were immediately called back. CT Scans only take 5 minutes, so afterwards we were on our way to Neurosurgery - again, a few minutes early. I was anticipating a long wait there, as well, but we had barely sat down when they called Matt back. It was so nice to see Dr. Walker again - have I mentioned that I trust him implicitly? He gives good advice and is amazingly knowledgeable because of his years of experience. He is just a wonderful doctor. Matt was released from his 'two feet on the ground' post surgery instruction and he can now ride a bike (with a helmet, the Dr. was quick to add), and do pretty much any other 'normal' 9 year old boy stuff. He can't, however, go back to P.E. Dr. Walker feels that it is too uncontrolled and can get too wild. Matt wanted to know if he could go to Lagoon, and the answer was YES. Roller Coasters are apparently okay, but jumping on a trampoline is not. I was worried that something physical Matt had done had caused the tumor to bleed (we had been boating, and he had been pulled on a tube, the week before, and he had just started Football). He has been an active kid this summer and I worried that by letting him resume activities, the tumor might be more likely to bleed. Dr. Walker said it's not related and Matt can go back to a normal physical activity level. Lastly, Dr. Walker had not heard that we had gotten a different pathology opinion from Dr. Burger. He felt like it was important to know whether it was a PMA or an Olio. In fact, as we left I think he was calling pathology right away. I'm glad he felt that the second diagnoses needed to be reviewed further. Dr. Burger is apparently one of the best and Dr. Walker wanted to know why he thought Matt's tumor warranted a different pathology diagnoses. So, now we are on the hunt for a 3rd pathologist to give another opinion. We are hoping there is someone at Mass General or something, since having Diana here is making me homesick for Boston! It would be a good excuse to take a fall vacation to New England (never mind the fact that we don't actually have to be present to get the pathology reviewed...)! :-)
So, that was our day. Matt had another day of feeling well so I'm going to send him to school tomorrow. Hopefully he continues to do well. We also find out counts tomorrow, so we'll see exactly how this round of chemo. is affecting him.
Love,
-Alli
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4 comments:
I am glad you had a good day! Keep up the good work and we'll keep praying!
Love Kristin
I am sure that you will have plenty of invites, but if you and Matt come to Boston, you guys can always stay with us. I'm glad that Matt can resume being a 9-year old. :)
Boston would love to have ya!!!
Denise
Hi, there is a weekly pediatric brain tumor conference here at MGH where they take in cases for review from around the country. If you want to have Matt's path reviewed, just let me know. BobC
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