Friday was Blaise's birthday. And what better way to spend your birthday than in the clinic! Blaise and Annie trekked down to CHOP for a follow up to his blood transfusion. The idea behind this visit was to just follow up and check his counts again to make sure he was ready for round 2 on Monday. It worked! Blaise's counts rose, and he was ready to go for round 2 of chemo.
We also got some rather good news. I guess Annie neglected to tell me that kids with Ewing Sarcoma are typically given two choices when it comes to the site of their tumor, amputation or endoprosthetic implant. Obviously, amputation would be very hard to swallow for me. And an endoprosthetic implant would mean continued surgeries as Blaise grew, because being a 4 year old he is not done growing. But the rather good news is that Blaise will not be going through either of these options. It's also unofficial because we do not meet with the orthopedic surgeon until tomorrow morning. Because of the location and size of Blaise's tumor the plan is to graft a portion of lower leg, the fibula (which we don't really need), to his surgery site. The rumor is that in a few years, Blaise's leg will appear to be a typical adolescent's leg. We are a bit away from this happening, but as the guy behind the counter at Oaken's Trading Post in Frozen says, "All good things!"
Also on Friday, a friend of Annie's came by to take family pictures for us before Blaise lost his hair. She was the same photog who took Blaise's baby photos. She has real talent, and can even make our family look good! Lucy was obviously ready to go, but Blaise was not. He had just woken up from his nap, and he really just wanted to watch this new movie, Happy New Year Charlie Brown, ever heard of it? We had a great time taking pics, and some came out real good. Blaise was tired and, fixed on the tv, but we still got some smiles! Thanks!
Against our better judgement we had our families over on Friday night too. Not because we did not want to see them, but because Blaise wasn't 100% and who knows what would happen. But as they've been telling us all along, get back to doing normal things. And when it comes to birthdays, we party! So we went small, just our siblings. And with families as big as ours, small does not work. Even Blaise's cousins from Scranton came down! Everyone wanted to come over and celebrate our special little guy. Blaise had a custom Toy Story cake and everyone sang his favorite song to him, Happy Birthday. For those of you that don't know, Blaise sings Happy Birthday to everyone and loves every second of it. He sings Happy Birthday like Annie sings Wilson Phillips! Blaise still was not himself, but he was feeling good. Lucy on the other hand was out of control, and assaulted a few party guests.
Saturday!
This was the day I had been promised! Blaise felt great! I knew something was up when I heard him walking around his room. I woke up to Blaise out of bed, walking to the bathroom, pushing his pole towards our room. I asked him where he wanted to go, and simply pointed (toward our room) with a huge smile on his face. Blaise was back! I cannot say this enough, this was my son in full force. He was moving and shaking. He was joking and playing with his sister. I think he felt the best he has in years. And he ate, he ate food and enjoyed it. We went on a family walk around the neighborhood, we went out to lunch, we had a great time. It was awesome! And add in the nice weather to all this, it was a great day.
Sunday
Sunday was another great day. He felt great, we felt great! Thinking back to February 3rd/4th, this was my biggest fear. I specifically asked the oncologist if he would ever feel normal. She promised me he would. And I Saw it this weekend. I took Blaise to church, and it was actually the first time ever I think we weren't late! He was good throughout mass, said his prayers and got his blessing. It was awesome, just like we would do before chemo started. I know chemo only started 2 weeks ago, but to me it seems like an eternity! And I know these words do not do it enough justice, but this weekend was amazing. Our family was back to normal, and it felt right. We knew the next round of chemo started Monday, but we embraced the moment, and enjoy every second of our time together. We even enjoyed a nightcap with friends!
Monday, Round 2
I was very nervous this morning! Coming off an amazing weekend, I was scared for the cycle to repeat. I did not want to Blaise sad, tired and helpless again. He was eating meals with us, he was playing with Lucy he was being himself. I forgot he had cancer!
So the plan was to get to the clinic at 7:30, well we were a little behind schedule! We got to CHOP at 9:00 am. And when I say we, I mean all of us, even Lucy! I don't know what were we thinking bringing our 18 month old daughter to chemo, but they feed off each other and we're all together.
I am still astonished at this situation down at the clinic. Its amazing. I can only describe it as if Disney met a doctor's office. Other than the beeping and buzzing of medical equipment, you would not know where you were. So the scheduled plays out like this, check counts, get some fluids in him, hang the chemo, check out! Pretty simple, right.
The first thing we need to do is access his port, which if you read the blog you know Annie has described as a UFC style fight. Accessing the port requires a sterile environment, so we need to wear masks. Needless to say Blaise was not in to that. Annie and Lucy conveniently left the room for this part! So its me and two nurses left with Blaise, one is accessing his port while me and the other one are holding him down. It was awful! Blaise was like the Incredible Hulk on steroids, thrashing and screaming. It was a scary site, and I could imagine an incredible difficult environment to work in for the nurse accessing his port. But she did it, and we're good.
Fun fact - Blaise's port is accessed all week for this cycle. So that scene will not be played out again this week!
So the port is accessed, the fluids begin to flow and Lucy thanks the nurses for visiting her! She has still not figured out that everyone is not there for her yet!
Blaise did great today. He was fun and engaging with everyone that walked in, unless you walked in during his 3 hour nap. He slept straight through chemo and really only woke up because we moved him to get him into the car.
Annie and I had to be trained how to use a new pump and give him medicine because we are doing this treatment out-patient. It is actually great because he requires 8 hours of fluids after this treatment, which means we'd be spending 12 hours at the hospital. And I know I say how great it is there, but 12 hours anywhere is too much, unless its home! So we learned, packed up the crew and headed home!
And here we are, day 1 of round 2 completed. Blaise is still in remarkably good spirits. He ate dinner, and had some laughs with us here. He is currently sleeping on the couch, at his request. I told him not to answer the door if anyone knocks tonight, and he said he would oblige, so I'll let him stay there!
#Bald4Blaise
What's better than a hashtag? Yup, the answer is nothing. So we started one, but its not just a hashtag. As you can tell we shaved Blaise's head. And not a day too soon, as we saw hair all over the bed this morning. But I also shaved my head, as did Blaise's cousins and uncles and grandfather. Blaise asked me to shave his sister's head tonight, but Annie intervened. Its just our way of showing solidarity. Blaise's cancer will go away after treatment, and our hair (well some people's) will grow back. He seems to dig his new haircut, and he is super pumped his family and friends are following. He is really excited his Uncle Bob grew his hair in for him! But let's see what you got world wide web, shave your head go #bald4blaise
