Biden may steal these too...

Zoe is sportin a new look - I know I'm the mom, but I can't get over how stinkin cute she is with her funky purple specs!  I'm sure Biden would love to get his hands on them!

*side note... I love that the secret service guys are trying not to crack a smile...  And I can't stop smiling when I look at the last picture in this post!

Our week...

It's a darn good thing we have insurance... because we'd be in serious trouble if we didn't.  I'm incredibly thankful every day for insurance and I worry about people who aren't in the same boat.  I can't imagaine the stress that would add to already stressful situations... 

This was our week.  MONDAY = port study at the hospital.  TUESDAY = a day off, but not much to do because it was snowy.  WEDNESDAY = an appointment for me and a vascular study for Zoe at the hospital.  THURSDAY = second port surgery.  FRIDAY = the never-ending oncology appointment.  It was a lovely week :)

                        Waiting for the port study to begin.  Thank heaven for Littlest Pet shops!

 Z fell asleep on the table after the vascular study.  She NEVER falls asleep in places other than her bed (sometimes in the car, but never in a random place.)  She has been completely exhausted...  This picture doesn't capture what happened, but it was actually really eery...  The lights in the room were dimmed, but there was a light shining right on Zoe... as she started falling asleep, she smiled and I caught a glimpse of her laying on the white sheets, with her hair swept off her face.  It was beautiful and horrifying all at the same time. 

Katie, one of the amazing Child Life educators, was showing Zoe for the second time what was going to happen when she went back for surgery.  In this picture, Zoe is helping give a "shot" to her little doll - the doll wearing the mask to get knocked out with anesthesia. 

Ready to roll for surgery...

If you've had a child get anesthesia before, you know that they "wake up" super confused and really angry.  I began singing to Zoe and she immediately calmed down... It was one of those mothering moments when you know that you make a difference.  We fell asleep holding each other.

Nothing a popsicle can't cure :)

My two favorites...

My beautiful girl is starting to look sick - having poison pumped into your body will do that...  She is incredibly pale and has a lot of little bruises all over her body.  Her hair may be on the way out.  Last night, I was trying to comb out a massive rat's nest she created during her nap and I ended up with two large handfuls of hair... 

punching bag

The oncology office said they wanted to get a punching bag for parents because of days like Friday.  Friday was frustrating - beyond frustrating, actually.  Remember how I said the second port surgery seemed to go really well - ummmm... that thought lasted about one day.  Our chemo appointment on Friday was supposed to be "quick" (as in like 2-3 hours) because Zoe was only getting the Vincristine this week.  Since I was expecting a quickie, I didn't even pack supplies - food, blanket, pillow, yada yada.  It turned out to be our longest appointment yet... 6+ hours at the office. 

Here is the rundown of what happened...  Zoe was already "accessed" when we got to the office - meaning that they left the needle & tubing inserted from the surgery so they wouldn't have to poke her port again because she was really sore.  When they tried to draw Zoe's blood, her port was blocked/clotted.  Not sure if this was the result of a new clot that formed in the past 24 hours or not - the first clot was still there, but we were told by the surgeon this new catheter was inserted deeper into the vein and would not be impacted by the original clot.  So.... this was the beginning of the frustration for me, the nurses, and Z's doctor.  They gave her a dose of the anti-clotting meds, which they have had to do every week.  You have to wait an hour and then try to draw blood again.  Try # 2 - same result.  At this point, I am ready to go ballistic.  Another dose of anti-clotting meds and wait another hour.  On try #3 they had Zoe sit/stand/lay in several different positions, raise her arms, take deep breaths, and FINALLY they got some blood.  Not quite sure what we're going to do if this port mess is a recurring issue... again.....

Now to even better news... we have to give Zoe blood-thinning shots at home twice a day.  I'm the designated shot-giver and Sean is the holder.  Actually, now that the weekend is over, we have to recruit help with the morning shot since Sean is already gone for work by the time I have to give it.  So, a dear friend came this morning to join in the fun - something I am truly grateful for...  It's horrible.  Zoe screams and cries.  I try not to cry.  She gets restrained, jabbed, and then bribed.  Makes me sick... The amazing thing is that five minutes later she loves us like nothing ever happened - she's amazing.

          **We are so thankful for Ms. Margy and Ms. Gretchen - such wonderful, caring women!**

Out with the old...

Surgery seemed to go really well. Surprisingly, the surgeon decided to use the same site - meaning that Zoe wasn't cut on both sides of her chest. They simply took the first port out and put a new one in. Z is upstairs sleeping - phew!

Round 2

Back to the hospital for more imaging this afternoon to find out exactly where the clot is. Surgery scheduled for tomorrow to take out the first port and get a new one. So sad she has to do this again.

port, schmort - grrrr....

Looks like Zoe is going to need a new port - not the news we wanted to hear today.  We didn't get a ton of information today - we expect to know more after talking with the surgeon or oncologist sometime soon.  What we did learn is that the vein the catheter is in has closed off, causing the catheter to angle the wrong direction - this is all likely because of a clot although a visible clot couldn't be seen in the images today. 

AND to top that off, we were told that Zoe had to fast for the procedure today.  Keep in mind that she has already had to fast several times this past month for various procedures/tests - not fun...  She's three... and she sobbed and sobbed this morning telling me that she was really thirsty.  Thankfully I had the Branch's care package stashed away for such an occasion and was able to pull out some Littlest Pet Shop magic.  It was probably a good thing that the lady who told me she had to fast wasn't working today when we found out that indeed she did NOT actually need to fast.  Seriously, people?!...

one day...

Dear Zoe,

I hope that when you read this one day you will know how much you are loved... You have people all over the world that are concerned for you.  Friends and family all over America, as well as friends in the Palestinian territories, Israel, England, Canada, New Zealand, Australia, Taiwan, Thailand and Germany.  Your dad and I have felt very humbled by the love and support we have been shown.  You are certainly a blessed and loved little girl.

Love always and forever,
Mom

guilty

I appreciate the opportunities I have to talk with other families during chemo time.  This week there were two children with Acute Lymphoblastic Leukemia - one child had been in remission for four years and just had a recurrence (not good)...  This child's mother was also diagnosed with cancer a year after the child was initially diagnosed... talk about tough times.  As I spoke with these sweet families I realized I was feeling somewhat guilty (not sure if that is the right word, but I can't think of a better one) for having a "healthy" child... it was an interesting feeling.  A reminder that when you think life is tough for you, just know that someone else is probably experiencing something similar or even worse...

chemo week 4 & port problems

So... three out of the four times that we've gone for chemo, Zoe's port has clotted.  After giving her a certain drug, they eventually get the port to work, but clearly there is something wrong.  She will be going to the hospital tomorrow for some testing to see what the problem is. 

The oncology doctors decided to administer the full dose of Vincristine again... and we've already had some eating issues this morning (Sunday).  Could be an interesting week, but I feel like we're a little more prepared this time if there are problems.

For her chemo art project of the week, Zoe created a lovely masterpiece which she titled "Summertime."  In explaining her work, she said it shows she and her dad jumping in puddles together... Funny and sweet to see what this little girl is dreaming of and longing for :)

midnight snuggles

There is something endearing about midnight snuggles with a child who needs you...  This past week, Zoe had a couple rough nights because of joint pain (another lovely side effect of Vincristine) so we shared some sweet time rocking together...

Since Zoe has some trouble pronouncing "r" I had to smile every time she asked me to wub her leg or her arm.... and she's a fairly demanding client - after wubbing for quite a while I'd take a break but quickly be told to keep wubbing!  Again, endearing...

During one of our midnight snuggle times, Zoe randomly asked, "What will I look like when my hair falls out?" as well as "What if the other kids laugh at me?"  It broke my heart that my little angel is worrying about this, especially in the middle of the night.  Before beginning chemo, I told Zoe that her hair would probably fall out, as an attempt to prep her for when this happened.  Well, turns out that was a mistake because it may not happen, apparently.  We haven't noticed any major hair loss or thinning yet, and every day that I get to curl her pretty blonde hair I feel grateful.

chemo week 3

This Friday, they bumped Zoe's dose of Vincristine back up to 75%... and so far so good! At some point every day she tells me that she's not feeling very good, and then generally follows the statement up with, "So, can I watch a movie while I'm eating??" She's a smart girl and a total rascal.


Her favorite activity during chemo is definitely the art room. She made a lovely valentine for her dad.


Sean came to be with Zoe during chemo because I needed to leave for a couple hours. I got back to the clinic expecting her to be almost finished and they actually had just barely started!!! Apparently her port clotted so they had to fix the problem before they could start the meds. It made for a really long day.


We are so glad it's warming up ever-so-slightly! We love our nature walks!

                                                  Playing with Ms. Gretchen during chemo

                                                  Her lovely glue and bead chemo creation

Enjoying some much-needed sunshine this weekend

she's back!

Our happy, fun girl is back!!  Zoe has had a great week so far.  Yesterday, she was feeling so good that I let her go to preschool in the morning.  When I dropped Zoe off at preschool, I went in to talk to her teacher for a bit.  After a couple minutes, Zoe came up to me, pointed at the door and said, "You can go there, mom.  C'mon I'll walk you there."  Translated to mean get outta here and let me do my thing.  :)  Little munchkin.....  While she was at preschool I cranked some music and scrubbed my bathrooms - it was wonderful!!!  For the first time in three weeks I feel like I'm getting on top of my life again.  We'll see how long this lasts...

Yesterday evening Zoe was still doing well so we went to her cousin's indoor soccer game.  I think normalcy is important, although I know we still have to be super vigilant about keeping her healthy. 

It's just so refreshing to have her laugh, run, and play.....  I've said many prayers of gratitude the last few days.

Mary Had a Little Lamb -- hospital style

Zoe loves to sing and is always making up her own songs...  Last night she came up with a little ditty to the tune of Mary Had a Little Lamb.  I didn't pay exact attention to the words until she got to the chorus.  The first part was about a friend who asked her to play and this was the chorus... "I can't play I'm really sick, really sick, really sick.  I can't play I'm really sick and have to go to the hospital."  A little sad, I thought...

Well, if I have anything to do with it, we are NOT going to the hospital this week and Z is going to play like crazy!

chemo week 2

Zoe truly had a great time at chemo this week.  She spent most of her time in the art room and went through two bottles of glitter glue and 7,000 beads while making valentine crafts.

The doctors cut the dose of Vincristine (one of the chemo drugs) by 50% in an attempt to decrease the jaw and mouth pain.  If she can tolerate this, they will slowly build back up to the correct amount. 

I realized today that every staff member in the oncology office seems to enjoy their job and they love the kids they work with... it was a neat thing to witness.  At one point, Zoe had four staff members surrounding her and spoiling her with attention... and they take great care of me as well. 

chemo questions

I've had several people ask questions about chemo, so I'll try to answer a few.

Zoe will go for a chemo treatment each week - probably every Friday.  We go to the oncology clinic near Fairfax hospital.  It's such a kid-friendly office with wonderful staff members who work so hard to make it a place where kids are happy and comfortable.  There are all kinds of toys, videos, and activities, as well as a full-time art/play therapist.  So, as long as we aren't sick and banished to the isolation room, Z will have plenty of activities to choose from!  She can just drag her little IV pole around with her and go wherever she wants. 

The chemo appointment takes several hours - as in 4 or 5.  Administering the drugs is only about 1.5 hours, but it takes a while to do blood draws/get lab results/talk with the doctor/etc.

If Zoe is healthy in between treatments, then Friday will be the only doctor day.  We obviously aren't off to a great start this week, but we are hopeful we won't need too many more IV days - keep your fingers crossed!

the "m" word - addendum

So, I talked to my mom and she said a few people were worried about the post on the "m" word -- So this post is just to clarify a few things.  We are NOT concerned that Zoe's tumor is malignant. (Atleast I'm not concerned when my mind is running on more than .2 hours of sleep and I'm not awake at a ridiculous hour of the night for the fifth night in a row.)  Also, we are completely confident in her wonderful doctors and know they are providing excellent care - we wouldn't accept anything less, trust me. 

I think that at some point in time someone must have written the term malignant on her charts and then it just keeps getting passed around/copied.  We will get everything clarified and corrected...

So please - nobody worry.  Next time I will keep my midnight worries to myself  :)

breaking all the rules!

Who lets their kid eat popcorn for breakfast??  We do, if that means she's actually eating! 

On Sunday night, Z's jaw pain became pretty intense and she developed a burning feeling inside her mouth.  She had about 10 oz. of milk on Monday and nothing to eat.  Zoe desperately wanted to eat, but every time she put something in her mouth she would scream and then sob because it burned her mouth.  She was miserable...  We were told to take her to the hospital, where they got her hydrated and doped up on morphine.  Sean talked them in to letting us sleep at home since the oncologist wouldn't be coming in until morning.  So, on Tuesday we just went straight to the oncology office and they did the same thing - IV and morphine.  However, on Tuesday Z did eat a little bag of popcorn - hooray!! 

Today has been a much better day.  Popcorn and blueberries for breakfast & powerade through a syringe.  Lunch was even more of an improvement.  Zoe was so excited to eat and not have it hurt terribly. 

We are really hoping this isn't the "new normal"...  We need a long term game-plan if the mouth pain is on-going.  The medicines she's been given to this point aren't doing the trick - and even if they were doing the trick we can't get her to swallow them because they burn her mouth... and pinning your kid down to force medicine down her throat is such an awful feeling. 

So, until we get it figured out, she can watch movies to distract her while she's eating whatever the heck she wants!