Monday, September 26, 2016

News From Base Camp... Day 2 of being back "home"

It's late and mama is tirrrrrrrrrred. But more importantly, overwhelmed in the best way possible with a full heart.  Overwhelmed with the love shown to Blu (and us) is.... honestly, I don't have the words to express myself (I did mention I was tired right?) :-) 



It actually felt good to be back "home" because Max and I knew Livy Blu Butt was in good hand and was going to get well.  I knew the IV's would hydrate her, and I knew the meds would kick in.  I also knew we were all forced to be here 24/7, together, and she would get all the love and meds she needs to heal.  I also think there is so much heavy weight that we've all felt this past weekend with constant wondering of what to do and when do we take her in.  It is so hard to know sometimes and at least when we're here, we're surrounded by people with years and years of experience and all of which have her best interest at heart and in mind.

Liv's overall condition has been on and off since yesterday.  Really, very similar to the weekend only this time we had someone who was able to check counts, numbers, stats and administer morphine when her pain was over the top. 



Her "Liver Injury" has been reduced to her having a 'bug' which knocked her out hard and a generic type of Hepatitis (no, not the kind you are thinking of... while it may come as a shock that she hasn't ben shooting up drugs with shared needles) which is common with liver malfunctions but with no real explanation.  She doesn't have Hep A, B or C, but her liver is still jacked up so its labeled as hepatitis and a viral bug.  The other side of all of this is that her liver isn't tolerating the one chemo med so we expect that to get adjusted for her next round. 

Cancer patients are constantly concerned with their Absolute Neutrophil Count (ANC) levels.  A normal person's ANC is well above a thousand while a moderate risk is under 1,000, and anything uner 500 means we have to be extra carefull.  If Liv goes under 500 she can't go to school anymore or other public spaces.  At our "Big Dose" two weeks ago her ANC was at 1,100.  This last Friday at chemo she dropped to 700 which is still ok.  That said we were expecting her to drop close to the 500 mark considering we've been told to expect the effects of the Big Dose to show up right as we were getting her Little Dose.  The blood work came back today... ANC = 90.  Sighhhh........ no wonder she feels awful.!  Her liver "numbers" should be between 30 and 40 to be normal.  Hers are at 3,000.  Eff.

Antibiotics were given, scans were done, platelets were administered, and finally a 4-5 hour blood transfusion completed the process.  Basically her blood making factory wasn't making the necessary cells quick enough so we had to call a timeout and sub some fresh blood into the game :)  DaddyMax explained the process which of course painted her as basically the most coolest kid ever because she gets super hero bionic blood and ultimately, she was ok with it. 

She had several good hours in which she had an orange popsicle and randomly (but frequently) requested Pumpkin Pie (thanks to all those who have offered to deliver!)

Damma arrived and it was the first time Blu had an actual smile in what seemed like forever. They played cards, Connect 4 and, of course, Damma  came with a few surprises for both Blu and Jet (my mom just plain rocks in every way!)  Liv was super happy and, as Damma's do, Sam needed her baby fix so everyone was happy. It's times like these that I feel blessed that my mom and Max love each other and actually enjoy  hanging out. (I feel just as blessed with when it comes to his mom and family)  Sure, he may whine and cry when she beats him in Gin but it's a respectful whine... :) 

I left Max, Damma and Liv for an hour and a half to pick up Super Jet :)  He was so stoked to see me and man it melts my mommy heart when I'm driving back to the hospital with him in the back seat and he wiggles his fingers for me to grab his hand :) :) :)  We just hold hands for half a minute and it gives us both that connection we need.  God, he is literally the sweetest kid - I mean the sweetest.  

We got back to our Rady Hospital home and he and Daddy Max finished up his homework.  Jet was the bearer of some fun news that none of us knew about... a massive card from all the kids in Liv's 1st/2nd grad combo class.




After some good but short FamBam time the boys took off for a soccer "film night" at fellow team parent's house.  It was so good for Max and Jet to have boy time together but also for Jet to have a "normal day."  While they were out and about, Little Blu and I watched movies and ate ice chips.  She also colored while I played on FB for a bit and caught up on some work emails. 

The good times were short lived however as things turned south without any notice.  Liv's fever spiked again late this afternoon/early evening.  She was MISERABLE and crying in pain once again.  Ugh- its so hard to watch her suffer.  But, just as they have every time before, the staff here rocks and they got her back to a comfortable place as she was well taken care of. 

Jet is at his favorite place for the night... Damma's!  Max, Liv, and me are settled in for the night.  As I type, Max and Liv are playing cards... and she is legitimately crushing him.  Even with chemo the little stinker can beat him :-)  Do not ever play Tic-Tac-Toe, Connect 4, or Speed with her because you won't win.  Ever.  Seriously, I think I just heard her say "Max you really suck at this game."  I"m not sure whether to be upset at her language or proud that she's putting the smack down :) 



Max is my rock.  He is the kids rock.  He's even my moms rock a lot of the time.  If I had to do this by myself, well, wow... I know as mama bear I could (and would) but I cry to even think about it dealing with everything all on my own.  I'm fine with admitting that I'm a strong woman.  All Craig women are but this has shaken me to my core and he just picks me up, makes us all laugh, gets the things done that I can't seem to.  He handles what I can't and then I do the same for him.  Its a crazy match (believe me... we have our own issues) but our little FamBam is so perfect... for us.  He left tonight to take Jet to his fun soccer "film night" and as I was walking back from getting Blu more ice chips, I look up to see him coming down the hall, returning to his girls, and tears almost well in my eyes as my love is back to sleep next to our baby girl (on the floor no less) all night.  Through some really crazy, stressful, insane times (but not forgetting all the good!) he is there through it all.  Thank you my love. 

As we got up to get Blu to pee before bed she started talking about her hair.  Daddy Max asked her if she is still going to shave his head when her hair starts to "really" go and she said, "Uh yeah... on one side I'm going to shave 'watch me whip' and the other, 'nay nay'"  AaaHahahahahaha!  After the laughs stopped she asked if there was stuff to rub on her head to make it keep growing or, at the very least, not fall out anymore.  So innocent and sweet!  She talked with Max about options.  He asked her if she thought that maybe there would be a time where we should just shave it.  Her expression went from jovial to serious... she stared at the ground in deep thought and simply said, "no."  Attempt #1 at adjusting expectations for her hair = not so much.

I am exhausted and we have at least two more days here but, again, I'm just SO full of love thanks to all our friends and family who keep her in their thoughts.  I read all the posts and and it fills me up with such energy and love.  Thank you!!!

As we kiss her goodnight I was reminded of something that I noticed for the first time Friday.. even her eyelashes are starting to fall out too. They are all over her soft baby cheeks :-/ Oh my baby girl... "I love you more than the Universe loves all the stars and planets!"




Sunday, September 25, 2016

Hurricane Chemo Officially Makes Landfall...

Well today is Sunday and we entered the ER after struggling all weekend with, "do we take her in or not?"...ugh.



Liv didn't go to school at all Tuesday.  On Wednesday (she got her watch back btw as it was our time again) she messaged me from school saying she felt sick.  I picked her up early.  Same thing Thursday- she just wasn't feeling herself- very tired and I knew this next round was going to knock her down flat.  Having been only 7 days after her 'big dose' last week I expected her to not feel great but never expected the weekend we were about to have.

Back to Friday though... to be honest, Liv had a lot of emotions and stress about where she would get to stay after chemo.  This added to her anxiety big time and when she gets this way she just wants one person... so DaddyMax just held her until it was time.






Port access went... sort of smooth. Still lots and lots of tears but she was brave overall. This visit was just the one med, Vincristine, and we were in and out in just over two hours.



Ultimately we were aloud to bring live home.  About half way home my worse nightmare came true, Blu started heaving and almost hysterically started vomitting out of her mouth and nose.  It just so happens that I have the worlds worst gag reflex and it was all I could do just to keep it together and not puke right along with her.  It was really touch and go there for a minute!  Max pulled over the car and, knowing how sensitive I am to even the sound of gaging, he ordered me out as he took over while she finished.  I had used a pair of shorts and her jacket to clean her off between throwups and wanted to just chuck it all in the bushes but Liv wanted to keep them so I put it all in the very back of the car.  We made it home without more vomit.

Once home and in bed I had hoped we were past the worst.  But after the stress, the vomit, the ride home... she was on fire.  The reality is that it all adds up and it just absolutely worked her.  We got her inside, cleaned her up, and got her settled in the cool AC to lie down.  The standard routine post-chemo has been that she feels bad at first but then she pulls out of it.  Unfortunately this time she never actually got better.  At all.  She refused to eat anything (and trust me, like her mama you can't force her to do anything that she doesn't want to do).  We tried everything under the sun... healthy things, not healthy things, milkshakes, popsicles, juice, graham crackers with almond milk (which she normally loves) but nothing sounded good and she got more and more pale.



Her temp would rise and just as we would agree to take her in we would take her temp one last time just to be sure it was necessary and the fever had fallen under the "go" line of 101.  So, we'd get her as comfortable as possible and just snuggled up to a movie.  Then the next hour she would sleep and wake warm and we would questions ourselves all over again.  The challenge is, as explained by our Oncologist, if you bring her in for any reason it will usually be a very very long process however if you come in fevered it almost certainly means 3 days of IV antibiotics as an in patient.  They had told us that even if they don't know for sure that she has an infection, it's a standard 3-day stay.  So they told us to make absolutely certain she's running and maintaining a fever.

I had called her doc on Saturday with my concerns and explained the wide range of the temperature readings we were getting and he agreed that we should keep watching it and see what happened.  So we took the doctors orders, made her as comfortable as possible, and waited.





Today we made the call.  She woke from a long nap and was just too hot.  We got her in the car, grabbed Larry the Lobster, her puke bucket, tossed in some clothes for us, a few toiletries, and headed to Rady's.



Her port was accessed super quick (thank you nurse Ramon- by far the easiest access ever) and blood work was drawn for labs.

Note Max's attempt at humor & a Yamaka 


They wanted an X-ray, to rule out any stomach or intestinal twisting from the vomiting, as well as an Ultrasound & CT Scan to look more closely at the liver.  This meant round two of the overnights here at Rady's.  Max and I both without thinking looked at each other and said, "guess we are going home... to the Oncology wing!"  Back again!

X-ray

Ultrasound

CT Scan

Max has a new favorite motto; one hour at a time.  Things have been so heavy, and emotional, and just plain ridiculous that even trying to focus on one day at a time is just too much.  Right now we're just trying to get to the next hour unscathed.  Each hour that passes without have something overwhelming happen is a good hour LOL!  So far we've strung several good hours together despite our current sleeping arrangements of the hospital couch and a pad on the floor :)

Liv is getting IV antibiotics and they've given her some morphine to ease her pain and let her rest.



We just got news that the X-Ray and Ultrasound came back clear but the CT Scan won't be seen by the Radiologist until tomorrow.  That said, one of her Oncologists did review the scan and the early thoughts are that Blu has a "liver injury" due to the Dactinomycin she gets during her "big dose."  This is a somewhat common side effect for some kids who don't process the Dactinomycin properly.  This isn't officially the issue but all signs are pointing in that direction.  This will ultimately mean an adjustment in the dosage moving forward.

So, for now, we've set up base camp once again here on Mt. Cancer Sucks.  We're tired but we're together.  We're missing Jet but he knows we're thinking of him constantly and are working hard to get our FamBam healthy and back together again as soon as possible.

Hopefully we an get an update out sometime late tomorrow once we know more.  Once again, thank you for your ceaseless love and support.  You all give us so much strength!

Max & Carlie

Tuesday, September 20, 2016

The Hill is Getting Steeper...

Wow it’s been a long week. It can’t only be Tuesday?!?!  Catching up since last appointment….Sorry this is so long!!


The Good:   Liv’s ‘big chemo’ went, well, as good as can be!  We got the numbing cream on her port early, had a quick breakfast, and got her checked in.  In the car on the way to the hospital we talked about ways that we can get mentally prepared for the morning.  One of the things we discussed was meditation.  Uncle Micah had sent some links to guided meditations specifically for kids so we practiced on the way to Rady’s.  (This proved to be such a huge help!!)










Check in was smooth and she was in good spirits. She listened and seemed to absorb more of the calming meditative messages.  We had nurse Sam who we knew from before and this really helped with Liv's comfort level as well as keep things running smooth.  Blu asked for... well, directed really... a countdown to 5 before they  access the port, but to actually put the needle in her port on the count of 3 so she wouldn't know it was coming.  Nurse Sam followed instructions and port access went over really well. 



Once the port was in, she looked up to DaddyMax and with her bottom lip out said, "can I cry now?" It was obvious she had been working so hard to be strong and just wanted to feel like she had done her best.  Max, of course, said yes to his baby girl and she immediately grabbed and hugged him and then pulled me into the family hug.  We all held each other until she was ok.   

She was SO brave!!!!  She was SO proud of herself and kept saying, “I was really brave huh?”  Out of all the things that she can't control, I think this was one thing she recognized that she could control so it was important to acknowledge this accomplishment.  We cheered and loved on her and she was happy.  (her need to control comes from me and I can't control Cancer... I try but I can't.  Liv is trying to control what she can and we have to support the things she can and help her to let go of the things she can't) God I love this baby.

Once the port was in and the blood drawn, she and Max went for a walk around the Oncology floor while I chatted with the nurse manager about the day’s treatment and what to expect for the future.  It took about an hour to get the lab results back and we were cleared for the chemo to be administered.  The chemo itself doesn't take long so only a few minutes later the tubes were removed and we were on our way home.  See ya !!!! (for Liv, thumbs up, sideways or down is a legit form of communication so this was positive!) 



We out!!



When Liv was originally hospitalized I had the chance to meet another mom that had been at Rady’s with her son for a shocking 31 days!  Her 4yr old baby boy, Jace, has to do 3 YEARS of chemo and it is administered into his spine :-/  (omg, trust me when I say we feel blessed... Liv has 6 months of chemo and they only have to access the port in her chest- trust me people- it can always be worse so look on the bright side!)  Needless to say she was a wealth of knowledge!  She suggested giving the anti nausea meds, Zofran, just before the chemo dose is due to be administered so that we get ahead of and ‘catch’ the sick feeling before it hit.  We took her advice and it really seemed to help.  

We seemed to manage her nausea fairly well for the first 48 hours but we didn't want to continue dosing her much more than we that due to the other potential side effects like headaches.   However, once we scaled back the Zofran she seemed to decline a little and it was definitely touch and go for awhile with her being sick and in a fair amount of discomfort. 


The not so Good:  Her hair is falling out rapidly.  Like, fists full.  We talk about it.  She gets it.  It sucks but she still has an overall positive outlook.  I think this affects DaddyMax and me more than it does her if that is possible?























She's losing so much hair that it's laying around in piles so Liv being Liv decided she would collect it and make something out of it.  Of course, she made a “hair heart.”  She named it “Hairy Sr." because she already named the mole on her harm "Hairy."  She's been carrying Sr. around with her.  Maybe it gives her comfort? 






















All in all she has been positive about the hair issue…. however, me?  Not so much... it makes me cry.  She used to have so much hair a comb wouldn’t go through it and now... bald spots and thinning.  





Auntie Wood sent a few fun hats and Joy from Little Locks sent some new headbands. F*ckCancer!







So what's a girl to do if she's losing all of her hair?  We hit the wig store....







Liv always wants to feel connected to us and even more so with all that is going on.  So we hit Verizon to take advantage of a ridiculously good deal and got Liv and Jet these super cool GizmoGadget watches that are actually phones that can call and text! (thank you Amanda for the recommendation!)  The kids LOVE them!!  We stored 9 ‘quick messages’ and 6 phone numbers so they can, at any time, reach someone.  This was super helpful in relieving some of Liv’s anxiety about being at school or away from us.  I was a little nervous as to what Liv’s teacher would say on Monday but she thought it was a "brilliant" idea :)  Both kids love them and I highly recommend them for all parents wanting to connect with their young children but don't necessarily want to jump straight to a smart phone. We got a deal on the watches and then it's only $5 a month from Verizon.





Today is Tuesday and Liv didn’t go to school.  She wasn’t feeling well.   I hate not being able to be right next to her when she's hurting :-/  Luckily I got to go visit her for just a few minutes today.  She definitely seemed "off"... not her normal self.  She seemed very tired and, unfortunately, she's having to carry some extra emotional weight on top of having cancer.  

Friday is her next chemo and given that her big dose was this last Friday her ‘counts’ should be low which is when she is most susceptible to infection.  I don’t think she will be able to attend school at all next week but I'm trying to think positive, as hard as it is, and praying for her to feel ok.  I’ve officially taken every Friday off for the next 5 months unpaid to be with her so I take comfort in knowing that whether I get her at home, or have to be with her elsewhere, I WILL be with her. PERIOD.



Cool photo of Liv's scar (And the original Hairy).  To be honest, I can't believe how good this looks!  I mean, they took out a 2lb tumor and her kidney out and this is all she has to show for it.  I am thrilled that this will fade over time :)  Of course if you ask Liv she will tell you the story of how we were camping one day and we left a jar of honey out on the table only to have a nasty gnarly bear come to take a swipe at Jet and steal the honey only for her to jump in front of Jet at the last second, saving his life!  Or, how this one time a shark tried to eat her and got a good bit in but......."you should see the Shark!" she says :-) 

Thank you to Terry & Greg, Danielle, Joy, Micah and Brooke, Tracy and Emilio, Max's amazing family, Annabelle, Paul, Liz, (I love you), Jason and Kurt (amazing cooking skills!), Brian & Janine & Mia, and so many others that my brain can't think of right now!  So sorry for forgetting people this week but we have been loved on by so many people and we are so thankful- It does take a village!- I need a nap :-)

Mommy out!

Thursday, September 15, 2016

Hair Today, Gone Tomorrow....

Liv had a good "post chemo night" last Friday.  We didn’t have Jet so me, Liv, and DaddyMax snuggled in bed, watched TV, and hit the hay early as it had been a long day.  Her tummy was still upset but after a few hands of UNO (she legitimately beats me) we all went to bed.  She is so precious and sweet and I love seeing her next to us all night.

I woke up early and started making coffee and crepes and as I went back upstairs, she and DaddyMax were just waking up.  Her beautiful hair was everywhere... on her pillow, on her back, flowing in beautiful strands.  She still has so much I am shocked given how much has fallen out! (hard to tell from the photo)



Erica,  (Max’s sis) and her kids, Sophia and Elle wanted to Facetime with Liv so while waiting for their call I got her dressed and tried to brush her messy hair.  I brushed as gently as I could but with each stroke clumps of hair stuck to the bristles.  How did this happen so fast??  She’s only had 3 Chemo treatments! It became very apparent that the poison they've been pumping into her body to hunt down the rapidly dividing cells was in full effect.

I have to admit…I was an absolute mess.  Max had left to attend Jet’s soccer game and it was just me and little Rainbow at home.  I tried (and succeeded) to hide my tears but my mommy heart was just breaking.  I know its just hair but also such a clear and tangible sign that my baby girl... has Cancer.  We talked and agreed that a hair cut was in order and it was time to go short!  Little Locks in La Jolla had a 9:45 appointment so off we went.  

The lady who has cut her hair several times, Joy, was there and I pulled her aside and explained all that has transpired since our last hair cut.  Tears welled up in her eyes but she went right to work.  While washing her hair, she kept having to unclog the sink as her beautiful hair was falling out.  Liv chose Cotton Candy shampoo and Pineapple conditioner.  When Joy towel dried her wet locks, the entire towel was covered in hair. I fucking hate Cancer.

I had to put my sunglasses on for part of it because as I watched her golden strands fall to the floor my heart fell with them and broke.  I couldn't help but think about how we have 5+ months left to go... what else is going to happen to my baby girl?  What other side effects of the poison they pump into her is she going to have to deal with??

Joy cut away and Liv said, in her ever optimistic and positive tone, “lets go shorter!”  So she did and really, we all love her new cut!  She was so excited to show everyone and we bought several new bows and clips and in true little Blu fashion, she skipped out to the car.



Our nightly routine at home has always been after bath, DaddyMax combs out her hair. For years this has been the routine. I'm not sure if its because he wasn't present for her hair cut as he was with Jet at soccer but, upon combing out her new shorter cut, I could tell that it was really hitting him that baby girl was definitely losing her hair.  He kept pulling it out of the comb and giving me this look like "Oh my god... it just keeps coming out."  







Liv got a really cute tote bag for her chemo apts which will be so useful- thank you Amanda for being so thoughtful!  We have it packed and ready to go in the morning with her favorite stuff :-)



Liv has been able to go to school half days till 11:30 all week.  We hope that will continue for another week but given tomorrow is her "big dose" chemo day,  I've a feeling it won't be long before she can't attend anymore.  I'm shocked she can still fit on DaddyMax's shoulders but when she asks, he can't resist.....



As a mom I don't know that the night before Chemo will get better/easier.  I trust and hope that it will get better for her and pray it will for me and Max.  As I write this knowing tomorrow we pick her up at 8am, put her numbing cream on her port and take her to Rady's Childrens Hospital by 9am for her long session (probably 4-5 hours) I try to go to bed hoping for sleep but knowing it won't likely come anytime soon.

Keep her in your thoughts and prayers :-) oxxoxoxo Carlie






Friday, September 9, 2016

Round 3.....she's losing her hair :-(



Well, today was Round 3 for our Little Livy Blu.  Her spirits were really good all week.  She has been so happy to be in school and starting to getting used to the schedule which includes knowing Chemo is coming up and, overall, she's been working through her emotions really well.  Thursday evening we had a little melt down.  My plan was to have them sleep in their beds as Thursday is a 'school night' but Liv worked her magic with the big softie, DaddyMax, so of course we all ended up together as usual. Max reads most nights and this is how I found them.  No TV or talking, just reading a great story and connecting as our little family does. She gets extra clingy the night before and we just want to love and support her emotions and needs. Jet too senses things and I'm so grateful our babies love being next to us all night. I love waking up and peeking at Jet on Max's side and Liv next to me.




Today we had a big breakfast.  I have been making crepes lately and surprisingly, given my total lack of any cooking ability, the kids love them :-)  I'm happy when their bellies are full for the day.  Once everyone was fed we all loaded up and got Jet off to school.


Upon pulling into Rady's Children's Hospital the tears started streaming from Blu's face and all she could say was "I hate Chemo and I'm afraid."  We were praying to not have the absolute melt down like last Friday but now we weren't so sure... another epic scene seemed to be on its way.  We got checked in and Liv and Max had a road race around the playground while we waited to get called back.  She won of course!



Compared to last Friday she wasn't quite in total hysterics this week but, it was pretty close.  We were lucky to get our same nurse, Ellie.  Liv really likes her and she was comforting however baby girl still almost made herself sick with the stress of them poking through her port. I can't blame her I guess as this is only round 3 but we all hope this will become easier. As usual she sat in DaddyMax's lap for the duration. God help me if something happened to him..




They say the chemo builds up in the system and welp, we have proof.  She didn't fair so well this time. She came away with a super, and I mean super, upset stomach.  She ran to the bathroom a few times and shed many, many tears.  Another source of stress for us all was that this was the first time she had to go to her biological dads post chemo because, "It's the schedule."  I drove her to his house and stayed with her for several hours because that's what a mommy does and, although she was supposed to stay there overnight, I finally got to take her home.  That's all I can say on that but the important thing is that she is now home with us and tucked into bed watching movies.  She still feels awful and will sleep next to us all night where I can monitor her for fever or anything else. I don't think I would sleep if she weren't here.

Next week is her 'big' round where they use both meds and I expect her to be worse than today but always trying to remain positive.  I guess the reality is, this is a long effing road for her (and us) and its just going to be what it will be. We will survive and be ok. The energy coming her way from everyone through thoughts, prayers, treats for her, cards, love and attention help tremendously and we are all so grateful.


Liv got my hair which is thick and there is a lot of it so we were hoping that since Blu was the same, she might not experience much hair loss if any.  Turns out, we were wrong :-/  It is like something switched on in her body yesterday and the entire morning it has continued.  She seems to be literally shedding.  Strands are just falling out of her head.  I can touch her hair and they just come away in my fingers.  It is all over my car and her clothes and the bathroom.  It is so strange to see this happening before our own eyes and so quick!! (she still has a total full head of hair as you can see in the pictures, but at this rate it can't be long before its gone) This makes me so sad. I know it is just hair and it will grow back but the oncology ward is so full of all these precious bald babies and I know she is next....FuckCancer.






We talked about different types of cancer on the way to the hospital, lung cancer, breast ('cupcake')cancer, pancreatic (which is what my dad died from), brain cancer, the list goes on and Liv is especially happy that her cancer won't make her lose her 'cupcakes' as she wants hers big and squishy like mommy's hahahaahhah :-)  She's definitely starting to talk more about cancer in general.  She asked Max last night to Google, "How do chromosomes get damaged" and she's quizzed both of us about the history of cancer in our family.  We see this as a good thing.  She's also starting to be open to coming up with a routine for helping her/us get through the stress of port access.  We'll see what we come up with this week but that's our focus for the next visit.

Thank you to everyone for the love and support. It could be waaaaaaay worse and while sometimes it seems tough and gets emotional, we are overall really lucky to be on the road we're on.

Love,

Carlie


Friday, September 2, 2016

Chemo Round 2 = Drama Mama.....

Well, Little Blu had her second Chemo treatment this morning.  This was supposed to be the 'easy' one (those were her words mind you).  Today she was scheduled to only gets one of the meds, (Vinchristine) and this isn't the one that makes her super nauseous.  As she held DaddyMax's hand on the way in she said, "you know last time wasn't so bad and I bet this time will be even better."  We were optimistic for sure and loved her positive comments.  While we waited she and Max, put together toy train tracks, read books, and made the obligatory jokes with her urine sample which,  naturally, was hilarious.  She loves grossing him out. :-)






This fun was short lived however as something flipped in her little head as soon as height and weight were taken and she was instructed to her little bed.  Instantly tears started streaming as she pulled her fuzzy blanket over her head, hiding her distress.  She became super bossy and from our perspective it was so surprising how everything turned on a dime.  It goes without saying... this is new for all of us.

She told the nurse she wasn't afraid of the port access (where they stick the needle into her chest to administer the meds) but instead was afraid of taking the tape off afterwards. Hmmmmmmm... last time the tape didn't seem to really bother her.  In the end I think this was her way of expressing anxiety and worry about the entire process and used the tape removal as her scapegoat.  Poor thing :-/   We totally get it and being just her second time, she did her best to put on a brave face and we tried our best to comfort her and calm her nerves (and ours).





The Child Life Specialists recomended we tried to entertain her... We tried soothing her and using the iPad but NO...she was not having any of it.  Like, 0 of it.  She whined about the face mask (and eventually threw it on the ground), the table was in her way, she was bored, she couldn't see the paintings on the wall, she was hot, now she was cold and really... she complained about every single thing she could.


And listen, god bless her little heart because this must be a MASSIVE undertaking for her but after a while Max and I just looked at each and other and finally said, "We love you.  We totally get how scary this.  But, knock it off."  We feel like we're walking a tight rope of loving and tolerant while at the same time not allowing her to deflect and delay the inevitable.  We have a really long way to go and there is no way we can do this process every single Friday with this drama.  After the port was accessed, this is when she took her face mask off and threw it on the ground in an absolute fit and, I gotta admit, I was pretty impressed hahahahaahahahaha!












                                          (note the hand over forehead dramatic gesture)


While she did scream at the port access, the meds were delivered super quick, the needle was removed, and we were done.  Quick exit and we were shortly home.

Once home she was feeling great.  She made pretzels in her Easy Bake oven, road her turtle scooter, and then.... her head started to hurt.  THANKFULLY, my good friend Amanda saw these days coming and had already given me a vial of peppermint oil with instructions on how to relieve a headache.  As instructed put some on her thumb and placed it straight onto the roof of her mouth.  Her eyes got super big  and then she almost immediately spit it out in the sink LOL!  However , jokes on her because 10 min later when I asked her how her head felt, she smiled and said "much better!"   Baby steps :)

She is now watching TV with a healthy snack.  Hopefully the weekend will go well.

Oh, and one other tid-bit of news... we learned today that because we're still so early in the treatment cycle that she is cleared to go to school next week 1/2 days!  The more normalcy and connections she can have the better :)

That's all for now!

Carlie