Our family...

*this is a disjointed post, but it all kind of fits together, so just keep reading...

About three months ago, I asked Zoe to draw a picture of our family, and this is what she drew... 5 "smiling" heads with stick legs and shoes.

Some of you know that Brother (whom Zoe calls Cutie) and Sister (whom she calls Beauty) have been part of Zoe's world for a long time... So it was no surprise that Zoe would draw them as part of our family.  Zoe started talking about brother shortly after beginning to talk and then sister followed about six months later.  We hear about brother and sister all the time... And Zoe quickly learned how to use brother and sister to her advantage - if she got a snack, she would need one for brother and sister as well, naturally...

So, going back a bit...  Zoe was diagnosed on January 11th.  On the morning of January 15th (a day or so after being released from the hospital) Zoe randomly said, "Brother and Sister were in bed with me when I was sick... and Brother told me that everything would be ok."  Well, that night we found out we are pregnant.  Kind of interesting...  And I have to admit that I was terrified for a few days that I was pregnant with both brother AND sister at the same time - but I'm not... just one little munchkin.  We should find out in one week whether it is a brother or a sister.  Here is an ultrasound picture from a couple weeks ago.

Because I will be on bedrest again, Zoe and I will be moving to Utah in about three weeks.  We will miss Sean like crazy, and hopefully he'll miss us a bit as well.  Zoe will continue treatment there (unless there are any major surprises with her upcoming MRI in two weeks).  I, on the other hand, will be parked on the swing in the yard eating burgers and shakes from Steph's drive-in.  I feel so blessed to have such amazing family members who are willing (well, willing atleast at this point) to do everything for Zoe and I the next several months.

One last little thing - I have felt really bad the last few months for not returning e-mails, phone calls, writing timely thank you notes, etc; I truly am so appreciative of the way everyone has supported and loved us - please know that... But most days when I had a free minute I was so exhausted or feeling like junk that there wasn't a whole lot I could do.  Please know that we have been so thankful!!!

just because

just because this smile makes my heart happy...

chemo week 8

Zoe's neutrophil counts came up slightly this past week - from 480 to 540. (Neutropenic is anything below 500.)  So, technically she is no longer neutropenic, but just barely above.  We were told to continue following the neutropenic diet and Zoe still can't be around groups of people or go into public BUT she CAN have playdates... which will be so wonderful this week because it is supposed to rain nearly every day. 

Because her counts are still really low, she had only a 1/2 dose of carboplatin again...  Out of the 8 weeks that she has had chemo, 4 of the weeks have been decreased doses of either the carboplatin or the vincristine.  I hope she's getting enough of the drug to actually do the job...  Of course I have asked these questions and have been assured that it will be fine, but it still makes me wonder/worry....

Zoe had such a great day on Saturday!  IT WAS WONDERFUL!!  We went on a long walk and Z wanted to be out of the stroller running quite a bit of the time.  We played hide and seek all through the forest.  At some point, we're probably going to have to inform the kid that just because her eyes are closed and she can't see anybody, that doesn't mean that people can't see her... Sean and I just loved every second of having our little rascal back!

chemo week 7

Sean got to be the chemo parent this past week.  I sent him with a long list of things to ask/things to do...
Things like...
*Get a lab report showing Zoe's absolute neutrophil count.
*Find out what the Lovenox dose is changing to.
*Talk with Evelyn, the nurse educator, and get trained on giving shots.
Just over two months ago, these "things" would never have crossed our minds... but now this is our reality and these are things that have made us more loving and grateful as parents... things that have brought our family relationship even closer... but also things that have caused our little girl pain and discomfort and made her grow up faster than we would like.

Zoe is still neutropenic (really low levels of white blood cells), which means she still has to be isolated... It's been tough because we feel like we can't allow her to be a kid, but actually she doesn't have the energy to do things she'd like to do anyway.  We went on a walk this weekend and normally Zoe would RUN the entire trail, but she didn't even want to get out of the stroller.  It's been difficult for Sean and I to see this change...

bummer

Zoe had another vascular study at the hospital this morning - the blood clot is still there... bummer deal.  So, she'll still be getting two shots a day. 

good news/bad news - chemo week 6

Good news first...  Zoe's new port worked perfectly today!!!!  Thank heaven!  We had a "quick" office visit and now we're home and Z and I are both going to take a nap.

Bad news... Zoe is neutropenic - meaning that her level of neutrophils (the type of white blood cell that fights off infections) is dangerously low.  Not good...  She got close to the neutropenic level a few weeks ago but then her white counts went back up but since dropped a ton this past week.  Her red blood cells, hematocrit, and hemoglobin counts have also been low for several weeks.  So... she is basically in isolation this week and we have to be careful about what she eats. 

If you were looking for something specific to pray for, pray that Zoe's counts can go back up and that she will not get any sort of infection.

I'll be brave...

Zoe has become such a champ about getting her shots.  When we started giving her shots a week ago we were dragging her out from underneath the table and now she will hold completely still.  The other morning when I told her it was time for a poke she said, "Momma, I'll be brave.  I won't freak."  She truly is my little angel.  On Monday, Zoe will have another vascular study to see if the blood clot has dissolved - if so, she will only need one shot a day. 

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...