Hi everyone! Sorry its been so long since my last post, this week was a long one. Here is my recap:
Mon-Our first apt was a Neuro-psych evaluation. Blake was so hungry he couldnt focus, so I asked for our apt to be rescheduled for a later time that week. We then went over to Proton therapy and Blake was so brave. There was a few faces I didnt recognize in the Proton room. This tall guy was the one who was trying to access Blake's port. He poked him 3 times before another nurse came over to do it right. I was so mad-Blake was SO brave-he watched the guy keep poking him with this big needle. I thought he would cry but he just watched. You could tell it hurt a little but he didnt cry. I was so proud of him. I could have killed that guy though. lol Oh and then that night when we got home his little port access tube-wasnt taped up good. He was playing on the floor and all of a sudden he is holding this little tube saying "here mom, help please" I thought it was one of Jeans parts or something. So I told him to put it back and he kept saying help mama. Then it hit me what it was-oh crap! Luckily his line was closed by the little clip-other wise he could have bleed out. I quickly put his tube connector back on-and made sure to make them tape it up so that wouldnt happen again. So scary! Then the poor kid came home and fell into the stone step and got a goose egg on his forehead. lol Poor kid had one heck of a Monday!
Tues-Oh Tuesday-what a day. This was my dreaded long day. It actually started off pretty smooth. We had a 730am labs, 800 EEG, then 930 Proton therapy, then 1200 Dr Slopis, then 2pm PT, 3pm OT. The first 3 apts went so smoothly. We arrived at the Proton Center-free parking, rode the shuttle over for the labs and EEG at the main campus, then caught the shuttle back over to the PTC (Proton Therapy Center). Once Blake was done with Proton therapy we caught the shuttle again back to the main campus, and this is when everything fell apart. lol So Dr. Slopis's nurse called and told me to come over right after Proton and they could see Blake early. So at 1130 we were in the waitin room. We waited till 1230 when the nurse let us know he had left the office and would be back at 1. Okay I thought another 30 min wont be too bad. At 130 I went up to ask the receptionist if he was just running late or what?! 10 min later they called us back to go to the exam room. One of his attendings came in and started the examination at 2pm. I was a little upset at this point-now we were missing PT. At 3 I thought she was done with us-well she was, but Dr. Slopis still wanted to talk with us. So we missed our OT apt too. We left his office at 430. I was SO exhausted and so was Blake. Dr. Slopis was very nice-but I feel like he should have rescheduled our apt rather than making us wait that long. He gave me some good info-and answered my questions. I just wish we wouldnt of had to wait so long, especially with how long our day was. By the time we got home we both were so tired-we ate dinner and crashed hard!
Wed-A nice recovery day for us-lol Only had Proton that day so we went out and did a little shopping. I found Blake a pair of white Etnies for $13.99. That is so cheap! I need to get him one more pair for when he grows. Normally Etnies ar $40, so they are a really good deal. lol.
Thurs-Proton, and saw Dr. Mahajan for our weekl apt. She said the redness on his head will soon be the area where his hair will fall out of. He is still doing really well with the radiation. So far it seems to be a lot easier on him than the chemo. He is full of energy and playing like a normal 3 year old! He is such a tough kid!
Friday-Started out with Proton therapy at 730-ugh! Then saw Dr. Wolff, who I found out is moving to Boston. I told him we were sad to hear it. We LOVE him!! Blake pretends to be Dr. Wolff. Then we had our Nuero-psych eval. Blake did a pretty good job, at the end our therapist had to bribe him with a surprise. lol He knows how to work the nurses now. lol He got a pretty cool tool set. We came home-napped, then that night we met up with Jamie and Pam and all went to the pool. Blake loved it! Jamie got in the big pool with him and was teaching him how to swim. The rest of us just sat pool side and hung out. lol We came home around 9 and hung out in the kitchen. After Blake went to bed we had a really fun girls night. Cranberry-Pomagranate Vodka drinks mmm!! lol It was such a nice evening. Perfect end to my week. I just love my family down here. I am really gonna miss them. I know that we will all stay in touch. Blake adores all of them. I think its SO cool that this experience has made me closer to a part of my family that I hardly knew when we first came down here. Now I fell like will be a part of our lives forever! So cool!
I also want to add that we made some really sweet friends at PTC. Blake loves playing with Noah and his little brother Isaac. He calls Isaac-baby Isaac. He is so gentle with him. lol Its very sweet to watch. Kristin is their mom and I have really enjoyed talking to her-she seems to have the same stresses as I do, and its nice to have someone to realate to. Especially when our hubbies are so far away-working. I hope to stay in touch with her as well. They are from Pennsylvania. I think it would be cool for Blake and Noah and Isaac to stay in touch too. Little pen pals-so when they get bigger they can look back and see what they experienced together at such a young age! Well, I think that about sums up my week. lol 3 more weeks to go and then we will be headed home to Lees Summit. I will talk to you all soon! Thank you all for the continued prayers and support! Love you all!!
