St. John Neumann
Okay, Andrew already blogged about this- but here to echo it- weird right? I just wanted to emphasize how oddly attached to a porcelain St. John Neumann statue Blaise was as a young toddler. Thanks to The Smith Family for giving us some family relics to lay on Blaise:
Also, thanks to the extended Murray Family for visiting the St. John Neumann Shrine and getting Blaise a personal medal relic of his own and a book for his Mom and Dad to read and pray with each day. We know Blaise's special saint is looking out for him (apparent Patron Saint of Ewing's Sarcoma!)
The Tube
Well, first day home was OK. Blaise got sick in the morning and I was so mad at myself for letting that happen. I should have given him ativan at 5 am- but that needs to go through his G Tube and he is still sensitive to that area- in time this apparatus will be invaluable- but he is still healing. Let me tell all the "lay people" a little more about this G Tube- you may all want one for your toddler! One of the first things we discussed in our initial family meeting was nutrition- this is a focal point of all oncology treatment plans at CHOP, but especially for Blaise's population. Different from just being treated with chemotherapy- Blaise will need "local control"- meaning, let's get rid of that part of his leg that woke up and decided to grow Ewing's Sarcoma. Ewing's Sarcoma is sensitive to radiation, but CHOP prefers surgery based on his age and the expertise we have available (more to come on surgery in a few weeks). The point is, Blaise will have chemo every other week for 12 weeks, surgery, then 16 weeks of every other week chemo- incredibly intense even for the strongest human (which he is). So our oncologist recommended a feeding tube up front- so that once Blaise starts slipping on his own nutrition, we can support him with feeds over night. We anticipate that to be in the next few weeks and he is being followed closely by a nutritionist who specializes in pediatric oncology.
I love this tube for many reasons. But two of them I will share- we can pick which medications we give by mouth or via the G tube. Now, I really want Blaise to know how to take medication (#lifeskills) - but that was my Mom Mantra from 3 weeks ago- when I just didn't want my kid to be a jerk accepting chewable tylenol. Adding oral narcotics or anti-nausea medication, and Bactrim twice a day, twice a week adds a level of drama that most almost 4 year olds just don't need- so why should my kid be different? So, I plug the extension tube in, give him the medication he needs, flush it, and its done. Second reason why this tube is awesome, is it is a "button" tube. Meaning low profile, meaning its under his shirt and you won't notice it and neither will he once it is fully healed. The above picture is a jazzy dressing we won't need in a few weeks and he can bathe, swim, and play like a normal kid with this. AND since rash guards and responsible sun protection are "in" as of late (smug parenting FTW) , we can count on total avoidance of other toddlers questioning the G Tube presence this summer in Sea Isle.
Blaise
So, how did he do yesterday? Well- he was TIRED. He ate a little bit, and he ate a little more with each meal. I was happy about this. He was uncomfortable in the middle of the day, right after a snack, so I gave him some ativan for nausea and he subsequently took a great nap and woke up for dinner and had half a PB & J! It was so great for Andrew and I to watch him enjoy something he seriously loves- PB & J.
Otherwise, we pretty much had a low-key day. Andrew went to work, and I was with the kids. Blaise needs a lot of support, but luckily Lucy very much wants to be in on the action- so it's pretty easy to keep tabs on both of them. Lucy was very busy with me yesterday- I was telling Andrew I can't believe we can actually keep someone "on staff" to watch her because she really doesn't stop talking. But Andrew brought up a good point- she missed me. I really haven't seen her in two weeks and that gave me pause to actually cherish this little chatterbox who I think believes this is her assistive device, not Blaise's:
St. Matt's
Since he was 18 months, Blaise has gone to St. Matt's Daycare and Preschool. We love this school so much and they have become part of our family. Yesterday, Andrew went to pickup some of Blaise's things. He won't be able to go back until he is done treatment- well, that's not entirely true. We could maybe work in some half days if he is feeling up to it- but we aren't sure if that is realistic. Either way, Blaise is used to being there 3 full days a week and that certainly won't be the case anymore. For some reason, this sucks for me. I get so sad thinking about this part. He loves his school and his teachers and his little friends, and Blaise is a quiet thoughtful boy- so to take something like that away from him makes me want to scream. And to see how affected the school is by Blaise's absence and story, solidifies these emotions for me. We will plan some visits and do some video exchange with his classmates back and forth, and I am so grateful for their prayers, love and support. Lucy's attendance at St. Matt's is also on hold indefinitely (she was supposed to start this week). I think she will adapt quite nicely to constant time with Blaise and I, so I am less worried about that.
Weekend
In the spirit of normalcy- Andrew is going to see Bruce Springsteen tonight and we are considering going to the Villanova game tomorrow to see our dear friends (and have a little fun). We will go back to clinic on Monday for a check-up and I suspect a nutrition consult. Thank you to ALL for reading our updates, helping with food, money, etc. It's such a weird place to be in- and we truly appreciate each of you and will never be able to truly express how much you all mean to us.
