another of Ben's wishes comes true

On Wednesday, I dropped my mom and Moffat off at the airport and returned home with Ben.  My mom called after checking in to tell me how much she had enjoyed our magnificent visit.  As she was talking, I kept hearing a beeping.  I looked at my phone to see if someone else were trying to call but did not see any message, so I assumed it was my mom's phone.  After I hung up, the phone informed me that I had missed a call from Ellie's teacher, Ms. Pettit.  When I listened to the voicemail, I discovered that Ellie was having a seizure that was  lasting around 5 minutes.  When a seizure lasts longer than 3 minutes, we have been instructed to administer Ellie's anti-seizure medication.  The paramedics were called in for assistance when it appeared Ellie was not coming out of it.  I was panicked as I tried to get my phone to work and kept hitting the wrong buttons, tried to get Ben's lunch packed up and myself in the car while continuing to breathe breathe breathe. 

When I arrived at the school, Ellie's teacher was awaiting us outside.  I raced in and she assisted Ben in exiting the car.    Ellie was coming around by the time I arrived, although she was still laying on her side, she was chatting up the medical team surrounding her.  An ambulance had been called to transport Ellie to the ER.  Ellie was nervous about riding in the ambulance by herself so I asked if Ben could also ride in the ambulance with me.  As the paramedics wheeled Ellie to the elevator, Ben bounded down the steps, telling everyone in sight that he was going to get to ride in an ambulance.  I mean he could not believe his good luck.  What a contrast between all of the somber adults, worried about Ellie's well-being and Ben full of enthusiasm and exuberance for his upcoming adventure.  Ellie was a bit afraid riding in bed where she was strapped down until I told her it was similar to riding in a bed at the hospital (which she has done plenty of as of late!)  The whole time we were riding, Ben had a running list of questions.  Why does the route look different from an ambulance?  (Answer:  Because we were facing back instead of front.)  Why did we keep stopping? (Answer: stop lights.) What other colors do ambulances come in?  (Answer:  red, white, green.  Ben would like a green one "next time".)  The baby was moving around like crazy the whole ambulance ride. 

By the time we arrived in the ER, Ellie had pretty much recovered and, although she was super sleepy on the ambulance ride, she was pretty much back to her chatty self in the ER.  And can I just say that you really do get the best service when you arrive by ambulance.  A child life worker, Amanda, was in the room and immediately set to work accompanying Ben to Tyler's Place.  Ellie had had a highly stinky and messy accident during her seizure so I set to work cleaning her up.  When Amanda returned she assisted me in that task as well as retrieving crayons for Ellie to work on.  Thom arrived a bit later with clean clothes for Ellie (and more crayons just in case).  He explained that he had gone ahead and ran his errands beforehand (what I titled, "Pulling an Elaine". From the Seinfeld episode where Elaine takes the time to stop and get candy at the movie theatre before arriving at the hospital bed of a friend.)   No one really knows why Ellie had a seizure today.  It seemed that she had a small one (lasting about a minute), last Wednesday.  Perhaps Wednesdays just make her have seizures.  It remains yet another medical mystery. 

Amazing how a day can change in a flash and then change right back...I think one thing I am greatful for today is that Ellie was doing better even when I arrived at the school.  Whenever there is some type of "emergency" situation that Ellie quickly recovers from, I somehow feel as if we have bypassed something.  Like we might have had to stay once again in the hospital, but we somehow got out of it.  Like getting to leave work early.  Or cake not on your birthday.  Or a surprise visit from somebody you love.  A warm day in March (in Wisconsin that does not happen very often). I almost feel giddy in the end, knowing that she is home now and feeling better.  Having Ben with us and his super excited attitude also puts things in a different perspective than we would have had otherwise.  Knowing that HE was beyond excited, made the experience more fun than scary.  And seriously we have been to the ER so many times as of late it hardly seems   'emergency'  anymore.  On the ambulance ride, the paramedic told Ellie that she would probably rather be doing something else than going back to the hospital.  To which I responded that we like to focus on the things we like about the hospital, such as all the friends we have there.  Then when we arrived, our oncology nurse, the fabulous Peter, was called to see if he could come and do the poke, making it easier for Ellie.  Because as Ben so clearly illustrates, going to the hospital does not have to be a tragedy or even something that ruins our day (although I think riding in the ambulance most certainly MADE his day).

Constant

[caption id="attachment_1196" align="alignleft" width="300" caption="She let me know pretty early on that she would not tolerate those bows."][/caption]

Last week, Ben and I were driving to pick Ellie up from school.  It was one of those absolutely gorgeous spring days that we often seem to have all summer long here in Wisconsin.  Bright blue skies, a breeze, maybe just a hint of chill in the air.  As we drove by Ellie's school, I noticed sweet Ellie standing outside with her class as they worked in the garden.  Ellie sort of stood off on her own, just contently staring at the sky or trees.  Suddenly a man across the street turned on his lawn mower and Ellie had a startled look on her face as she does any time loud noises startle her.  What an illustration of  how constant Ellie is.  I mean most of us (even 5-year-old Ben) alter ourselves depending on who we are with and what the situation calls for.  Not Ellie.  She will have the same response regardless of if she is alone in her room, at school, on a walk...She is just constant.  I was sort of inspired as I sometimes find myself twisting and turning myself into loops trying to "fit into" a situation.  How much more freeing it would be to just be able to authentically be myself regardless of what was happening around me.

THE Lion King

[caption id="attachment_2542" align="alignleft" width="300" caption="Val and Ben snuggle up."][/caption]

Last night, we went to the Lion King.  We won tickets through a drawing at the hospital.  I learned long ago to enter drawings at the hospital because it seems as if most families who are in the hospital are so concerned about their ailing child, they have no use for drawings.  BUT if you are professionals like we are, you can take care of said child and win some lovely free things.  (Like a weekend at Great Wolf Lodge a couple of years ago).   Karly and 5-year-old Valentine joined us for the evening.  I love watching Karly with Valentine because she so thoroughly enjoys being with her daughter.  She allows Valentine to be five rather than trying to "fix" her into being more grown-up. 

Ellie decided her perfect evening would be hanging out with our great friend, Brittany (the one who visits every day when we are in the hospital).   Earlier in the day, I'd asked Ben if he wanted to get dressed or just keep his pjs on because we did not have big plans for the day.  He informed me that he wanted to wait to get dressed to be "handsome" for his friend Valentine.  (Since most of his information on 'mating' is from dinosaur videos, I was not exactly sure how this would all pan out...)  When Valentine heard this news, she was quite delighted and decided that she would dress beautifully as a princess for the evening.  Ben decided wearing his lion costume would be the absolute perfect thing to wear to the Lion King.  And when people in the theatre commented on his costume, he sort of looked at them strangely, as if he were wondering why they too were not wearing lion costumes.  I mean it IS the Lion King afterall. 

[caption id="attachment_2543" align="alignright" width="300" caption="Ben in his Lion costume. And yes, he would adore a similar dinosaur costume."][/caption]

 Beforehand we were invited to a reception for all the families who had won tickets.  It was fancy and yummy (two of my favorite things!)  Had to have myself a chicken finger for the baby (otherwise I would not be eating chicken fingers).  The opening number was breathtaking, Circle of Life.  The costumes were just so incredibly creative.  It felt more like an event than a show.  At one point, one of the actors spoke in another language which included a lot of clicking sounds, which Ben happily joined in.  It fels sort of 'in stereo' when he accompanied the speaker.  After the intermission, Ben and Valentine were sitting in the same chair together snuggling.  Valentine said to Ben, "Hey, let's play boyfriend girlfriend!" To which Ben responded, "Let's pretend you're an alien!"  Karly and I laughed thinking of how many adult relationships go that way--the woman thinks they are playing boyfriend/girlfriend while the man is thinking the woman is an alien.  Thom thought it was a good take on the Men are from Mars/Women are from Venus theme.  Every time Val would see me, she would run to give me a huge embrace around my big baby belly.  Which I both adored and had to brace myself for, as I do for Ben.  After the show, Valentine and Ben played hide and seek and tag in a huge lounge area until an usher came to inform us that they were locking up.  As Val was exiting our car, she gave Ben a huge hug with a big kiss on the smacker which Ben loved because not many 5-year-olds want to hug and kiss as much as he does.  The whole thing was a magical, marvelous night!   And it wasn't just the night itself, it was being excited beforehand and talking about it after that makes it just live on and on...

[caption id="attachment_2544" align="alignleft" width="300" caption="The Lion ROARS!"][/caption]

And for all of you left wondering.  I was not totally clear that we have in fact gone home from the hospital.  We arrived home on Tuesday at around 5pm.  We thought we would be home much earlier, but then Ellie started having some weird symptoms like headache, vomiting, and the right side of her face was no longer working.  Whenever a doctor would come in to exam her, though, she would be able to work both sides of her face.  Like I'm just making all this up.  We finally decided to go home (and quick like before any one changed their minds) and come back if things seemed to get worse.   She is doing great today.

Doing better!

[caption id="attachment_2538" align="alignleft" width="300" caption="Ben and his whale."][/caption]

Ellie is doing so much better today.  They want us to stay overnight to do chemotherapy tomorrow (typically we do it on Mondays).  So that Thom could go to work for a half day, Ben has been hanging out with Ellie and I for part of the day (after he went to sibling care this morning).  He has done a marvelice (marvelous + nice) job.

The great thing about seizures...

[caption id="attachment_2534" align="alignleft" width="300" caption="Ben and I dressed for Halloween last year. Ben is a fish and I am the rain. "][/caption]

On Wednesday, Ellie had an unexpected seizure.  I was interviewing for respite care earlier that day and assuring them that I was not too concerned about her having a seizure because she didn't even have one after her most recent surgeries.  Anyway, Thom had just left for badminton when Ellie started yelling from her room that she had had an accident.  I raced upstairs and found her standing by the doorway, sort of stuck, unable to step up out of the room.  I tried to help her up over the step when she suddenly fell to the floor drooling and unresponsive.  I shouted downstairs for Ben to bring my phone, which he could not locate.  I raced downstairs (with the baby probably saying, "What the heck happened to my peaceful home??") grabbed my phone and called Thom.  Because badminton had already begun, he could not hear his phone.  So I called my neighbor Lindsay and she ran outside to her car with her 2-year-old, adorable Juna, to alert Thom to the situation.  She raced to the high school and began searching for the gym where Thom was playing.  As Lindsay was searching, Ellie started coming to a bit.  She was able to talk with me but not able to stand or sit.  She continued to stare over to her left side.  And everything but everything was funny to her at that point.  Which is what I think is the great thing about seizures that you can feel so happy and carefree after they are done.  Almost as if something has been reset.



When Thom arrived home he administered the anti-seizure meds and we decided it would be prudent to take Ellie to the ER to check her sodium levels.  We were just totally convinced that her sodium had dropped and that was what caused the seizure.  Well, in the ER we discovered that her sodium was still in the normal/slightly high range.  After a quick brain MRI (invented by our neurosurgeon, Dr. Iskandar) it was discovered that the cysts had actually grown again.  Her preventative anti-seizure meds were increased and she and Thom went home. 

On Saturday Ellie seemed more sleepy but she had not slept much on Friday night so we were not particularly concerned.  Then she continued to sleep all night Saturday night.  When Thom administered her morning meds, he was unable to awaken her and became concerned.  She was also running a fever.  Thom and Ellie rushed off to the ER once again.  She was given a stress dose of steroids (100 mg, her usual maintenance dosage for steroids because her body does not produce them is 5mg, 3 times a day.)  The steroids seemed to revive her.  When I arrived in the ER, Ellie had a small seizure, maybe 3 minutes long.  But in that amount of time, I was able to run out of her room yelling, "SHE'S HAVING A SEIZURE!!"  By the time the ER personnel sauntered in (it takes a LOT to get them excited!) Ellie was coming out of the seizure.  Since then she has had 3-4 mini seizures sometimes only noticeable because her oxygen levels drop.  Don't know if the seizures are being caused by an infection (less likely) or the cysts (possibly more likely) or something entirely unexpected and unknown as of yet.

Surrounded by Kindness

[caption id="attachment_2530" align="alignleft" width="300" caption="Ellie before she banished blue from her wardrobe (because of its masculine qualities.)"][/caption]

A couple of weeks ago we were waiting to get Ellie's blood draw at the hospital.  I looked up and spotted one of Ellie's classmates, Sade.  She had just had a blood draw and was with 2 adults.  Sade immediately started telling us how incredibly horrible the blood draw had been.  The women with Sade explained that when Sade was offered a prize after her blood draw, she asked if she might also pick  a prize for her classmate who had just recently been released from the hospital.  That classmate just happened to be Ellie and we just happened to be waiting right at the exact moment that they were leaving.  The toy she picked for Ellie is a stuffed animal moose named, "Chocolate".  My Aunt Linda sent the same exact moose to Ellie during her first round of chemo, 5 years ago.  Linda explained that Chocolate was referred to as "The Moose of Courage", many women took Chocolate to their chemo appointments to give them courage throughout the whole process.  Can you imagine what kind of magic had to happen that day for us to be there at the exact time Sade was there and for Sade to pick the Moose of Courage for Ellie without even being aware that it was known as The Moose of Courage?  Amazing. 

Speaking of Aunt Linda.  She just sent us 3 boxes of crayons she has been collecting from the elementary schools of Culpeper, Virginia where she lives.  Imagine our surprise and delight at finding THREE heavy boxes of crayons on our front porch fully packed with crayons?  Now we have no worries about running out crayons for the rest of the year of chemo!!

Both of these stories just reminded me that  kindness constantly surrounds us.

Decisions

[caption id="attachment_1187" align="alignleft" width="300" caption="Baby Ellie and Dr. Daddy."][/caption]

For the next year, Mondays will be our days for chemotherapy.  Two exceptions to that:  if Ellie's white blood count is too low or if Ellie has not po-poed (to put it delicately).  So we were here on Monday for about 3 hours while we had a stomach x-ray and a  physical and blood draw. 

After Ellie had a big blow out of her intestines on Monday, we needed to come back today for chemo .  Ellie was highly sad this morning thinking of coming to the hospital once again.  She was much more interested in staying in her room and doing burk (book + work).  We started talking about how I too used to feel as if  hospital days absolutely had to be bad days.  That I had to feel sad, terrible, horrible.  Now I know that even though we are committed to going to the hospital, I can still decide what kind of day I want to have.  I refuse to allow the hospital to decide for me.  Or use it as an excuse to 'ruin' my day.  Ellie and I often talk about how there are things that we "have" to do but we always always have the choice about what we think about and therefore how we feel.  We discussed how we can decide what we want to focus on.  On the one hand we could focus on the parts of the hospital we hate, the pokes, the blood draws, the x-rays, the CT scans, the MRIs....which all feels very bad and sad.  Or we can think about all the wonderful people at the hospital.  How much we enjoy seeing them and

[caption id="attachment_1102" align="alignleft" width="300" caption="Ben climbs a mountain of dirt."][/caption]

tit tatting (talk + chit chat), how everything is so much easier than when Ellie was younger, how clean it is at the hospital, how our whole experience of the hospital has been transformed.  Which of course feels much much better. 

Once we arrived at the hospital, Ellie set off telling everyone she saw how "jilled" (joy+filled) she feels this morning.  Right now she is sitting on the bed awaiting chemo telling jokes and singing songs while she breaks/peels crayons (thanks Grandma for the box of 48!!)

Last night Ben was having a hard time sleeping.  I was laying quietly beside him pretending to sleep, to show him how it is done.  Suddenly, his eyes popped open and he said, "You scared the crack out of me!"  To which we both laughed and laughed at his joke.  Not very conducive to sleep.