Infusion 7

I dropped off Cordelia at Kindergarten and then we had to stop by Meme's house because we had forgotten a small stuffed pig that Phoebe got in a claw machine there.  She'd started asking for it the previous night and then remembered to ask for it again in the morning.  This girl's memory is getting good--- no pulling a fast one on her!

Phoebe was getting tired, but I then had to make a quick stop by the house once more to get my notebook, which I had jotted down a few questions to ask Dr. B because there are always minor things I wonder about but forget to bring up in the moment.  Phoebe talked me into giving her a snack and we were on the road by 9:15.  Traffic was still moving slow.  Our appointment was at 11, and with parking and getting checked in at security, I was still walking into the Bass Center at 11:05.

As I was leaving I saw a sign that said IMMUNE COMPROMISED AND BASS CENTER PATIENTS USE VALET SERVICE.  Which is us, so maybe next time I will use the valet?!

Similar to last time, we had a bit of a wait before getting moved to a room.  It was after 11:30 for sure.  We spent the time doing some arts and crafts with some women who were there as volunteers.  I think their t-shirts said something about Childhood Cancer and art.  They had rubber stamps and also magazine pictures of animals to collage with.  Phoebe enjoyed it.

We had our own room this time.  The privacy is definitely a plus!  Phoebe wanted to watch Elmo in Grouch Land immediately. Our nurse was really nice, she had a two year old and we had a lot of conversations about kids and how they speak Italian at home.  I was able to handle the Tylenol on my own, but she had to help me get Phoebe to drink the Benedryl.  We managed to not have her spit any out.

Our nurse deferred to a more senior one to help place the IV.  It happened pretty fast, I didn't quite know it was about to happen.  Child life never came by at all, though that's supposed to be part of Phoebe's file.  I didn't have the ipad set up, so I just quickly pulled up some home videos on my phone of us looking at colorful fish and jelly fish at aquarium.  I don't think I even had Phoebe's paci or other distractions, so Phoebe cried pretty hard.  But the nurse was very confident and got it on the first try, so yay!

The nurses all wanted to know why Phoebe was doing such a long infusion, as opposed to the one hour one.  We got asked that last time as well.  I said I could ask Dr. B when she came by later.  One nurse actually wrote the question on Phoebe's white board, and then as soon as Dr. B arrived they pounced on her with the question as well--- they were really eager to ask her.

So I guess they are used to administering a more rapid infusion, though that is mainly for GI patients-- Chrons, IBS.  But I guess if you have proven to handle Remicade, you can have it done at a faster drip speed.  Some patients may have an "infusion reaction" where it makes them start to feel poorly for getting it so quickly, others may have issues with their veins from trying to do it that way.  But, even though you can still develop belated allergic reactions to Remicade, I guess this doesn't necessarily increase the likelihood of becoming resistant to it. Anyway, I said I didn't really have an opinion on it, but would defer to their medical opinions.  Dr. B was not opposed to the suggestion, so re-ordered the infusion for that day to be done in 2 hours and said we can possibly try a 1 hour one next time.  So if we go that route, that could be a big game changer.  I've sent Dr. B a follow up email to get a little bit more information about it.

I did ask about what the options for closer infusions would be.  I sounds like we could go to John Muir, though the downside would be it would be in an infusion center with lots of beds, not individual rooms.  It would be run by children's oncology, so the oncologist would have to examine Phoebe and they would also have to get approval to also administer methotrexate there, Dr. B wouldn't be able to visit us, etc.  We discussed a couple other options about changing our scheduling for staying at Stanford and working around traffic.  Dr. B asked if Phoebe'd been to the hospital playgrounds yet, which we hadn't.

Dr. B examined Phoebe and the good news is, she still has no active arthritis.  I said I'm thinking about signing Phoebe up for some sort of gymnastics class, since she loves to climb and swing, and she said that was fine.

I asked if she saw many siblings with JIA/other autoimmune or rheumatological conditions.  I think she said it's about 25% of cases, there can be other conditions within the same family.  I said that Cordelia has asked about getting arthritis, and so far I have been telling her she won't get it because it's not contagious.  But Cordelia does seem like she has what I would describe as "floppy" joints.  I am not qualified to diagnosis her with hyper-mobility, but that girl is very much a noodle to me.  I know that some JIA kids have hyper-mobility, but Dr. B said that hyper-mobility on its own was not a red flag, and it fact was not regarded as a problem unless there was pain associated with it.  So that was really good to hear, because I wasn't sure how they were all interconnected.

Along with trying to avoid getting too inevitably sick, I asked if Winter weather was a trigger for flares, and she said that there is a correlation in symptoms getting reported.  But hopefully we will not have that problem, because Phoebe is doing amazing.

We also talked a little bit about joining the Parent Working Group.  It is for PR-COIN, which stands for Pediatric Rheumatology Care and Outcomes Improvement Network.  She said that Dr. L at the hospital knows more than she does, but currently Stanford does not have a representative, and she was suggesting me.  So that is kind of cool.

I have already asked on Facebook and gotten connected with a mom who has a big role in the group.  Participation has certain time requirements to be met: about 15 minutes a week spent on emails, and an hour long phone conference call once a month.  There are also a couple weekend conferences in Cincinnati during the year, but those are more optional.  It sounds like there are a lot of Projects and Committees, but I'm not sure what exactly those would be pursuing.  The mom suggested that some people make a separate email account for handling PR-COIN business, so I am thinking of doing that.  It seems like there is a lot involved (welcome email was filled with info and acronyms and ends with "if we haven't scared you away....")  but I'm pretty interested.

The 2 hour infusion seemed to go fine.

We were finishing up in the 3 o'clock hour.  Our nurse left to get the methotrexate and must have gotten caught up doing something else because she was gone another half hour or so.  I started to show Phoebe part of the Lion King, intending to turn it off after "But I Just Can't Wait To Be King," but I must have dozed off in the middle of that song because next thing I knew there were scary hyenas chasing lion cubs around.  So we switched to Moana for the last part of the day and got up through her meeting Maui.  So that tells you how much time went by, I guess! lol

It was at last time to remove the IV.  Apparently there is a national shortage of the spary they use to remove medical tape easily.  This is one of Phoebe's least favorite parts.  She does not like the spray and she really does not like having tape or bandaids taken off.  So doing it without the spray was really sucky and she cried a lot.  I was kind of stunned at there being a national shortage of this product.  The nurse didn't know much, though she said sometimes there are planned shortages.  I tried googling to see if there were any news stories about this just now, and nothing came up, but you can order it for like $15 on Amazon, so...... I dunno..... anyone wanna Amazon Prime me a bottle to bring along next time in case they're still out?  ha ha.

Her nurse had a light up Chewbacca toy

Phoebe did not take a second nap, but with it being 4, I decided not to leave and hit rush hour.  She was pretty tired, but we decided to follow Dr. B's suggestion and walked over to the new hospital, just down the street.

When we came there in February, parts of it were still under construction.  Phoebe was so little and in so much pain back then, she had no appreciation of things like the whimsical decor of ocean animals and native CA beasts.  Now she had to stop and hug or pet every animal statue we encountered!

Phoebe thought the sand pipers were hummingbirds.

We went to the playground outside.  It was very beautiful, incorporating mosaic work into all the structures.  Phoebe was just the right age of it, the slide was so small.  We had so much fun, but I wasn't like, amazed by it.  Dr. B had mentioned a garden, and warned us about bees, but to me, it wasn't very expansive, just some nice landscaping.

Instead of scoping out a restaurant for dinner, we just went to the Harvest Cafe.

Phoebe picked the banana herself and carried it to the cashier

It was there that I realized that there was a whole other play area outside the cafe.  I'd seen part of it being built before.  Now it was finished.  Here was the garden Dr B was talking about.  We were not troubled by bees; instead a dozen hummingbirds were fueling up for the night and dive bombing each other over our heads!

Ok, here are a ton of pics to enjoy!

Cordelia would lose her mind over this mountain lion cave.

This tree fort is amazing. I need it! 

We left around 6:30 and made it home around 8:20.  Some traffic, but no sitting at a full stop for ages and ages like we experienced before.

The song of the drive was "Let Go" by Frou Frou.  I like the lyrics that say to stop waiting, just jump in and Life will be amazing.  So often I hold myself back, or don't say what I'm thinking, but I'm trying to be better about it, even compared to just pre-parenthood Rachel of five years ago.  I have a lot to stand up for now.  Someone else I know was talking about finding enjoyment in imperfections and I feel like the phrase "there's beauty in the breakdown" really describes that.  My life is not perfect, and sometimes it feels very chaotic, but even on hard days like infusion days, there turned out to be a lot to enjoy.  I love my family and I love this incredible gift Phoebe has given me of making me a stronger mama, watching her fight and seeing how passionately she loves the world.

Night Before Infusion Post...

I've been meaning to post here for a while, but it's been hard to sit down and write a longer post.  Also, I have been trying to share a bit more on social media to advocate for JIA more publicly, but that tends to be shorter posts or little bite-sized bits of information.  Phoebe has a FB page and I'm also experimenting with twitter, but still don't really get it.  Is it better to retweet or comment on something, ha ha, I don't understand how it works!

If anyone somehow wanders over to this blog from one of her sites, hello.  This blog is still public, but tends to be rambley and personal, so not really good to share widely.  

In my last post here, I recorded that Phoebe threw up before her shot, but that thankfully has not happened again.  In fact, Phoebe has been showing her mastery of the shot night routine by recreating it in her play.  She has a "script" or schema that she follows--- you get the shot, you cry a little bit, and then you get a hug or a bandaid.  

Shot Night with Foxes.... an alternative to Dances With Wolves?  Ha ha.  Phoebe gave the baby fox a shot.  He cried and then got a hug from his Mama.  She then gave the Mama fox a shot.  I had just gotten my flu shot that day.  I can't remember for certain, but I think she may have given the baby a shot in the leg, and the mama a shot in her arm, which would have been 100% accurate attention to details.  But I can't be sure.  

Cordelia was sick with strep.  She had a fever and threw up on the way home from the Renaissance Fair.  Poor C, she didn't get to enjoy the fair, while Phoebe had a blast.  Cordelia did not have a sore throat, but after she threw up 5 times, I took her to urgent care in the morning.  She seemed to be feeling better and was chatty with the doctor, so it was a surprise to both him and me when the rapid strep test came back positive!  I thought I was being overly cautious, but it was worth it because we were able to put her on antibiotics immediately and no one else in the house got sick.  Win.  Poor kid, she was super sick.  In the video she was saying she was going to take a nap, and she actually did!  You know Cordelia is sick, as she stopped napping 2 years ago!!

Here is another example of Phoebe doing Shot Night Play.  This is my second video of her attempt.  At first she said "Bee" and got the buzzy bee.  Then she adorably announced " 'hot.  'hot."  as she can't say "shot."  She also said "poke" and "DONE!"  She put on the bandaid, but then immediately said "off" and took it off.  That video goes on for too long though because Phoebe couldn't figure out how to turn off the bee at first and it just keeps buzzing, really loud and annoying.  After that, she reeenacted it again, which resulted in this video.  She is calm and efficient.  "Done!"  I love how matter of fact she is about it.  

Anyway, these videos really show you how smart Phoebe is and how amazingly well I think she's processed what happens to her.  Phoebe is apprehensive about going to the hospital tomorrow though.  She has said "poke?" sadly, several times.  I am trying to reassure her that I will be with her the whole time and try to remind her of the other fun stuff we will get to do, like see the trains and watch Elmo.  Phoebe said "dog," but I don't have the heart to tell her the dog won't come to the Bass Center.  Boooo.  

I am very much looking forward to seeing Dr. B!  Hopefully we will be getting a good report on Phoebe's joints.  She has also been in touch with me this week and sent me a link about being a parent representative for Stanford for the group Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN). So I will learn more about that tomorrow.  

Moving on to a separate issue, Cordelia has been dwelling a lot on death again, and it's kind of hard.  She hasn't asked if Phoebe is going to die lately, but she is going through another mourning period of missing our cat that died a year and a half ago.  We went to a very fun Harry Potter potions party, but Cordelia became sad and said that she wanted to make a potion that would bring dead things back to life.  And that maybe Willow wasn't really dead, she was just sleeping and we could un-burry her, etc.  I tried hard to just say that being dead was just kind of like resting, you don't have to do anything or go anywhere or be worried about anything.  But once you're dead, you stay dead. (And I also believe that once you're dead, you're probably ok with staying dead.... bringing people back is always a mistake, whether it's Buffy.... Fulll Metal Alchemist.... never goes well.  ha ha.)

 Cordelia has also been bringing up when Jason or I are going to die and if she'll be with us, and kind of wrestling with the idea of how sad it would be to be without your parents.  Jason is of course, kind of blunt, "well, no one knows when they will die...." but I am just trying to reassure her that we all are going to live a long time and will all be together and see her grow up and see her future kids grow up (she wants kids) and that she is taken care of.  Anyway, it's not all the time, but she will still occasionally say things slightly weird things like "I'll love you forever, until we die," so I guess she is just internalizing her mortality or something.  I guess the hardest part is that it makes me wish I *had* told her some version of Heaven or spirits can live on, etc, just for something more comforting.  But I firmly don't believe in losing kids in euphemisms ("they're in a better place"), and was direct with her when we talked about death before, but now it just feels harsh to my own ears that she is also speaking about it so directly.  Obviously she has questions and probably some anxiety about it, I hope I'm doing my best to help her understand and feel secure.  I'm not sure what exactly I was told as a kid.  I definitely had some notion of heaven, not sure from where.  As an adult, I kind of have an undefined view--- nobody knows, so it's not really worth worrying about, but more likely than not, it's just an end.  I'd like Cordelia to have that rationale too, but at the same time can see how she'd miss the comfort of a story/belief like Heaven....I wish I had some deeper and more profound conclusion to bring to the end of this paragraph, but really, I just don't know what's best psychologically and hope I said things that make sense to her.

As I said, this blog tends to ramble, especially as it approaches midnight.  You can probably tell I'm tired and not looking forward to tomorrow.  I'm going by myself, which I'm fine with, but at the same time it is harder just mentally preparing for it.  It's getting easier, but at the same time it's still hard.  I mean, do you really get used to this?