We accomplished 2 dental appts (both for me) and clinic for Gracie including 6 hour fast from 9:30-4:00ish and methotrexate/vincristine in 28 hours:)  Glad to say it's all done.  Surprisingly as a hygienist I HATE getting fillings...maybe it's because I feel I of all people should know how to prevent decay.  Guess we're all human and life throws at us sometimes what is hardest for us.  Anyway as I sat in the chair and even somewhat approached that thought of wishing I wasn't there my mind instantly flashed to my hero Gracie and how in her honor I should suck it up and be a  "big girl".  So I did.  Besides I can't compare that to how amazing she is b/c 4 fillings is cake walk for that champ. 
She went over 6 hours fasting and I only recall her asking once or twice for water once her clear liquids were gone.  My opinion...she has angels surrounding her...oh and she's one tough cookie!  We woke her at 8 (usually she sleeps til about 9:30 or so) and got her a good meal including chocolate chips!  When you endure what she does...you deserve a few of those in the morning to get you through the day!  And as I hoped she took a nap before clinic and we woke her about 1 to finish up getting things ready and headed out.  All 4 of us went this time and Tyson spent much of his time flirting with the female Dr and nurses.  Cute little guy he was awesome too.  He was quiet on the drive there and back...I assume sleeping.  And he was pretty much happy the whole  time we were there and i only had to feed him once while Gracie was coming out of sedation. 
I believe this was sedation #13...believe it or not.  In my 25 years I think I've had ONE!  ONE!!  That sounds ridiculous to me I've had one and my 2 year old has had 13 with at least 6-7 planned in the near future.  She is a little more sensitive to her port lately and seems hesitant to have her shirt taken off ever even at home and points to her port and says "hurt". It makes me sad.  She looked more like she was having a seizure than I've ever seen with the sedation and it was hard to watch...but of course as always easier to watch than leave her side while that's happening.  Once they put her on the table her arms were jerking around.  Today and last night she's complained of her back a few times...sad to hear...I'm sure from the spinal tap. We finished treatment last night about 5:00 pm on the dot so we all hung out in the clinic for another hour to avoid the bad traffic.  Easier to care for the kids there than in the car for an extra hour while we wait to get on the 405.  I've sat there for 45 min before and had no desire to repeat it with Tyson and Gracie.  The drive was fine after we waited out the traffic. 
Gracie has been so much more talkative and vocal lately.  She will say "YES" really loud and sometimes whle throwing her arms in the air with excitment it's adorable.  This week I asked if she wanted a bath or a shower with Mom and she got SOO excited and kept saying yes and throwing her arms up.  She is just eating breakfast now it's almost noon.  I gave her zofran this morning and she hasn't been interested in eating.   Typically if we let her eat before Zofran she has thrown up in the past.  So thankfully I remembered and she didn't eat right away so far she hasn't thrown up yet and seems content with eating. 
I talked to Gracie's Pediatric Oncologist yesterday who said Tyson weighs enough that he should be able to start going longer at night and we could start working on that...I guess he heard her b/c he only went to bed at 10:30 and woke up at 4 and drank 4 oz i had pumped with Todd and slept til 9:00.  It was so nice to have a night of sleep.  Although I still feel tired...it's a strange thing catching up on sleep it takes a while.  We'll see if he continues.  I've learned to never expect anything to stick with kids then your not SORELY disappointed when they dont'.  `  

Medicine time...

As of late...

I've been too tired and busy lately to get much blogging in...so in order to catch up I'll just quickly go over highlights!
Gracie had clinic this past Monday.  I know I'm a week behind tomorrow is Monday and i'm just posting about clinic.  Her ANC was 1700 so she passed counts and we only have 2 more treatments left in this phase.  He said things went pretty well but not much detail to share since I'm the detailed one out of the two of us and I wasn't there so I'm going off his description.  Her other counts were about the same as the last visit and her weight bounced back up to 15.2 kg.  Not long after they got home we experienced one of the world's LARGEST dirty diapers.  It was oozing out the sides of her diaper and pants...sorry for the gross image.  We don't know why but seems anything that's bad can happen after clinic...maybe the extra fluids they gave her/chemo?  We'll never know for sure.  It was pretty upsetting to her though...sad to watch.  We stayed on top of her zofran good enough I guess b/c we didn't have any throwing up this time.  She goes back Thursday and the BAD news is I can't get her sedation any earlier...unless we get a last minute call this week and its scheduled for 3:30.   YUCK so she'll start her fast at 9:30 am.  Not sure why we're having such a hard time getting morning appts lately. 

 Family temple trip

Made cookies...this is what happens on Todd's timer:)  Plus entertaning two small children!

Tyson's favorite toy...he loves his ball and chewing on his hands. 

He's really growing up and getting big.  He's already starting to wear some 9 month clothes.  He's got the cutest laugh and we love listening to him coo and talk.  Gracie loves to give him hugs and smother him and then she quickly decides she's done and pushes him away.  But she loves her "tys"

 Gracie's favorite toy...the dishwasher tablets.

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Tyson enjoying some outside time with us.  He's 4 months tomorrow:)  Hard to believe...but at the same time it's been a long tiring 4 months not because we don't love him to pieces just not enough sleep and too many dr's and other appts. 

We had Thanksgiving dinner just the 4 of us.  Here's my very first turkey.  Todd says it turned out well.  We had turkey, mashed potatoes, gravy, stuffing, yams, homeade rolls a veggie tray and some razzleberry pie and ice cream:)  Not bad  for cooking it myself I thought.   

Gracie and Tyson enjoying each other after Thanksgiving dinner.

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Watching Frosty onee of Gracie's FAVORITE movies right now along with Horton Hears a Who and she also really likes Barney and Elmo.  Gracie's starting to talk a lot more and we love being able to communicate better with her.  We took her to the park last week and we all loved it...she climbed, went down the slides and had a great time swinging.  A little girl asked her if she wanted to play and she quickly responded "no".  I guess this isolation business is affecting her.  Hard to think what things may have been like if our lives hadn't been affected by cancer...but not much point in doing it so we try not to too much. 

Handsome brother :)

Such a sweet little guy. 

He's starting to like a little time in the jumperoo! 

Mom and Tyson after Thanksgiving dinner.

Methotrexate again...

So it goes...my predictions seem to almost always be wrong.  Haha good thing I didn't go into oncology my patients wouldn't be pleased with my totally wrong predictions.  Then again maybe that's why they don't predict too much for us...This week I thought she would bomb counts!  I was wrong...she somehow went up from 900 before her last chemo to 2400 in her ANC.  When I asked the Dr why he said there is no logical explanatino and tried to tell me why then stopped and said if I told you something I'd just be making it up!  Haha gotta love a Dr with enough humility to be honest...I appreciated it anyways:)  So Friday I took Gracie to clinic and Todd was gracious enough to stay home with Tyson who ended up sleeping for like 3 hours of it...they somehow know when he's responsible for them it seems and sleep so much better.  Or I'm just so tired that I see it that way...probably the latter. 
Anyway at clinic she got her zofran and we waited for her labs from downstairs to come back...and when they should have been back the nurse called and they said it was lost somewhere in the tube system.  So she redrew the blood and we started again.  A while later it came back good ( her liver enzymes-blood chemistries- have to be at a certain level for methotrexate as well as her blood counts).  Thankfully she fell asleep for about an hour or so while we waited b/c her appt was at 12:30 pm despite my efforts to get an earlier appt.  She woke up mad while they were giving her chemo, but we managed to hurry and get out of there and head home just before the rotten friday night traffic I think we left about 3:30.
Her sleep schedule is way off even though we had somewhat regulated her for a few nights she slept last night from midnight til 11 am.  And she just woke up from a nap...Yikes it's 8:45 pm.  You'd think at 7:00 it would be for the night.  Nothing like cancer to ruin a child's sleep schedule.  She's sleeping more from the methotrexate she usually only sleeps a max of 9 hours a night typically 8.  Tyson has really been a starving little guy i pumped one night b/c I was exhausted and Todd thought if he slept right next to him he would sleep longer.  Nope...he still wanted to eat about every 2 hours.  He's darn cute though and we love him.  But I wouldn't turn down a little more sleep at night.
Gracie woke up yesterday morning around 10 and didn't want to eat for about an hour and then when she did after a few bites she got a scared look started crying a little and grabbed at her stomach I tried to hurry and get her out of her seat and to the sink...but alas it was unsuccessful and we both ended up with smelly oatmeal on us.  Just makes me sad that she has to keep getting stuff that makes her feel that way.  Wish she could tell us so we knew how long to give her her medicine cause she acts ok...then suddenly throws up.  Oh well only 3 more doses of the IV methotrexate.  She is really acting older and LOOKING older.  Several of the nurses and her Dr mentioned it at clinic this week.  Shes' getting taller and thinning out.  She's lost some weight too probably a combo of her not eating much for a few days after chemo  and some of the steroid weight coming off.

Clinic Stats:

Weight: 14.8 kg (down from 15.1)

ANC: 2400

Hemoglobin: 11.7

Platelets: over 400,000

She's talking more and more and seems to understand so much.  Her hair is also beginning to come back in.  Just peach fuzz still but looking darker and there are more little hairs growing in.  

Started Interim Maintenance 2

Well we made it into the 2nd to last phase.  Sounds awesome huh!  Only two more phases!  We've made it through 4! And the two most difficult!  It is really awesome and for now we won't think about just how amazingly long the last phase will last ( as long as she had been alive when she was diagnosed with this awful leukemia-18 months).  She snuck above the necessary 750 ANC with 900.  Makes me think this phase is going to drag out and we're going to fail counts a lot.  We've done this phase before but with lower doses of the chemo.  But last time when she started it she was at 3000 and after the first treatment dropped to 1500 I believe...so I guess time will tell.  One thing is sure we'll probably learn more patience and an even greater ability to live with our unplannable schedule!  We know we have clinic on the schedule but nothing more than the next appt can actually be planned because she may or may not pass counts.  Anyways she did pretty well today as always it's no fun to watch your baby cry out when they give her a sedative (propophol) and then quickly go into a deep sleep.  Even when your doing it for the 12th or who knows anymore time in 6 months.  Glad to check another one off though.  We didn't see our Dr today and haven't for probably a month.  I feel a little more uneasy when someone else does the spinal taps I've just grown to be comfortable with her I guess...oh and also she's an awesome Dr and Gracie likes her best too!  Probably won't see her the rest of this phase because she's only there Tuesdays and our new schedule is tentatively every 10 days.  Daddy and Tyson came with us and he was a trooper.  Slept the whole way there and the whole way home.  If only he had slept a little more last night:)  Mommy was super tired this morning when she had to round up the crew and try to get us all out the door by 8:00 (haha-that's way early for us...but we do it for clinic).  Also no we didnt' make it out the door by 8:00 I think it was 8:25 but I believe they were up in the clinic by 9:10 or 9:15 which is pretty good given the time of morning we were taking off and traffic.   I missed her height and weight b/c I had Todd run her up and parked and brought Tyson and all the stuff later to avoid ruining the sedation time for being too late.  Still grateful we ended up with a 10 am sedation not 4 pm that would have been a REAL drag.  Gracie did great over all but got pretty upset and inconsolable about 15 min after she woke up from sedation and we don't know why.  She was fine then not then fine then not...you get the picture.  I just wish she could tell us you know...maybe she had a headache from the spinal tap, maybe the sedation made her feel lousy, maybe she was too hungry or tired.  Wish I knew so I could fix it better...but learning to just deal with things and do the best I can when there's nothing else I can do. 

Clinic Stats

WBC: 2700

ANC: 900

Platelets: 354,000

Hemoglobin: 11.3

Oh also one more major side note.  Dad has been home for the last week and we have Loved it.  He's heading  to Utah this weekend for his brothers wedding and we'll miss him and hope the wedding goes off perfectly!  Congrats to Marc and Tiffani in advance!  And my sister Cheryl is flying in tomorrow night!  I'm way excited to see her it's a pretty good trade since the kids and I can't make it to the wedding! 

Until next week...

Tyson's 3 month

Well Tyson had his 3 month birthday!  I love celebrating anything I get the chance to, but what do you do for 1/4 birthdays?  I think Todd had a great idea but we didn't do it!  He suggested we all get a glass or bottle of milk and drink it with him haha!  Instead I probably just annoyed everyone with mentioning several times that  it was his 1/4 birthday and having us sing to him.  We love our little "Tys" as Gracie and now Dad is starting to call him.  She has been waking up the past few mornings and asking for Tys.  Last night she wouldn't go to sleep because he was out here screaming after having a blowout and peeing all over his face while I tried to change him.  Of course it ended in a lot of screaming and therefore Gracie coming out to check on her brother.  She does love him! 

He is such a handsome little guy and has gotten less fussy lately.  He was sleeping better for a few nights but I think he was just playing a joke on his Mom because I thoroughly enjoyed a few five hour and one 7 hour stretches only to be rudely awakened to a 2-3 hour schedule again.  So I tried to get one feeding off to sleep and pumped 5 ounces after 3 hours of sleep he sucked down the whole bottle and was still hungry so I had to get up anyway and he ate quite a bit even after that and was up again a few hours later.  I guess he's growing...well I know he is cause he keeps getting bigger...but cuter too!

He's got just enough hair to do a little faux hawk maybe you can see it...hard to see in picture maybe but he looks cute anyways!

Loving some time with Dad!   I think Daddy's all enjoy them more as they get more interactive and Tyson is starting to smile and talk whenever we give him attention it is so fun and he's so cute to watch and interact with.  Gracie has even got him laughing once or twice.  It was so sweet so see them both so young and still lovinc each other. She of course always wants to rip his monkey out.  He's always got his fist in his mouth and I've started to seeing him looking at his hand.  He's finally learning he has hands isn't it amazing the learning process they go through?  Can you imagine not knowing you have hands?  I guess we all went a couple months without knowing.  He has also decided it's best to have several blowouts a day in fact pretty well every time he dirties a diaper so that it seems I eternally will be behind on scrubbing out poopy clothes and blankets...although I get tired of it with him I realize it is not a big deal while with Gracie 3 blowouts and peeing all over would have meant a very dificult day. Amazing how our ability to deal with things and what we see as hard changes with trials and learning to endure. 

Here he is bundled up for Gracie's birthday walk.  We are loving watching him grow and develop and are excited for all the new phases to come!  He is so strong as he always has been and holds his head up so well!  We love you little Tys!

Clinic-attempt to start Interim Maintenance II

So after Halloween and her birthday came our cold splash of reality (although there were a few moments mixed in between with reality).  Clinic!  She did great fasting thankfully because she failed counts so new treatment. 
Clinic Stats
Weight: 33 ish lbs

Height : 2 feet 11 inches- she looks taller to me lately

ANC: 400 (reason she failed it has to be 750- the last set of chemo really wiped her out it's been 3 weeks since she's had anything).

Platelets: over 400,000

Hgb:  around 11.

We go  back Tuesday to try again.  Quick story I wasn't expecting to pass b/c I knew there was a chance she wouldn't so I prepped for it forgetting that scheduling another sedation could be a challenge. Took the news well and Wednesday got a voicemail saying her sedation was scheduled for 4:00 pm the next Tues.  Arrival 3:00 sedation 4.  I tried to remain calm and thought maybe it can be changed but freaked out inside.  Can you imagine NO LUNCH for a child and NO NAP!  That would mean she couldn't eat from 10 on and she wakes around 9.  So breakfast and then then she usually takes a nap about 1:30 or 2!  Haha that would be when we would leave for clinic 2 and then she'd have 2 more hours before her sedation.  YIKES!  This sedation thing can be a stressor for sure...so I immediately called the oncology clinic and asked them to please keep calling sedation in hopes for a cancellation.  Bless Sally's soul!  She called back the next day and said she wanted to kiss the sedation person she talked to because they got it changed to 10:30!  Oh such a blessing esp since even after she fasts we don't know if she'll pass counts and therefore it would have been possible for her to go without naps and lunch just to get to clinic and find out she failed counts!  I told Sally I could kiss her and felt MUCH happier that day!  Also nice to know we are going to a clinic where they feel to a degree how we feel...she wants the best for Gracie to instead of just telling me no I can't keep calling because that's a pain in my neck!  Grateful for such great staff that are helping us on our journey...esp since I'm sure their job isn't always the easiest...but hopefully rewarding. 

A picture of a "normal" hour where we went and played and ran in the leaves!  She loved it and so did I!  And Tyson slept happily in the stroller!  Got a few looks like what are you doing crazy lady with 2 small kids in the street (we were on the side of the road).  The answer we were just making a lasting memory and experiencing pure joy!  Worth the stares I think!

These little things remind me so much of Gracie (not sure what they're called) but she has always LOVED to hold them shake then and blow them.  Hope her wishes are coming true!