Chemo from home

I guess it's a good thing I chose a somewhat medical related field for my education.  Who knew I'd be a home nurse 7 years ago when I was choosing a career.  I suppose our Father in Heaven knew.  I still can't believe how quickly life changes.  A week and a half ago after our long day at clinic when I was driving home at 8:30 pm from a 10 hour day form the oncology floor I thought WOW!  I mean really...WOW!  9 years ago driving home at night on the freeway was scary...I mean really my family would FREAK out.  Now I'm driving home at night in Portland coming home from a 10 hour day at a clinic where I layed my daughter on a bed for probably the 11th time sedated for another spinal tap then had hours of infusion and several chemos and in between fed my other baby several times with help from my mother-in-law.  I guess my fears have certainly changed in 9 years as well as what "normal" means. 
Big tangent I know...the point of this post is...WE DID IT!!  We really did...the worst of the chemos have been given and all of our at home chemo is done. 

Here's our chemo setup...consists of a sodium flush, cytarabine (chemo), another flush and heparin..oh and alcohol wipes of course to make sure it's all clean so we don't infect her port. 

The 2nd week went much better than the first...it was much less traumatic for her she cried MUCH less and I even got to snap a couple pictures of what the poor girl had to walk around with for 4 days-2 weeks in a row.  I'm sure it woudl drive me crazy.  We used the coban to keep it in place this week and it worked much better.  She hated having her shirts taken off and always said "bye-bye" and wanted a shirt put on to cover it up. 

Our last day of chemo...such a champ just watching a movie and no tears. 

Our morning routine we aren't sad to see change:)

See that sweet little boy in the background?  Such a sweet little guy hope he isn't being put on the backburner too much with all the attention we give Gracie.  We love him SOO much. 

Look at that face...tell me you expected a cancer patient to look like that (other than the bald head).  I'm always amazed how happy she can be and how much energy she has after all they do to her.  She was runnign down the hall so happy

Tyson's 2 month

Tyson had his 2 month appt Wednesday and he is a healthy little guy...with a bit of a temper and a very healthy set of lungs.  He weighed 13 lbs 8 oz and was 24 inches.  He was in the 80-85th percentile for height and weight and 70th for his head.  The Dr couldn't believe how strong he was, he always has been.  We have such a fabulous pediatrician that we used to see with Gracie and now she has a fabulous ped oncologist and Tyson see's her old pediatrician.  She was with us for over 20 min just talking about how everyone was asking about Gracie, Todd, Tyson and me.  She said she thinks about calling often, but doesn't want to take my time.  She's called probably 5 or 6 times since Gracie was diagnosed and talked 20-30 min each time.  I know I'll never be satisfied with another pediatrician.  So back to Tyson I am SO grateful for his health.  He is developing just as he should and in some ways ahead just because of how strong he is.  He does have a bit of a temper he'll be happy one second and the next screaming, then when he gets what he wants he calms down and he's smiling and even laughing sometimes.  About 4:00 this morning I was burping him and thought he was asleep and he just started laughing it was so adorable.  He loves to be held and he loves him Mom.  He seems to always want me to hold him and he still really likes nursing and eating often.  He's doing better at night in general but not quite as good since his vaccines.  He was SOO sad the day he got his shots and he just cried and cried a new cry, it was kind of a high pitched shriek.  He wouldn't even nurse he would just scream when I tried so I got him to sleep a few times and we just sat there and didn't move so he wouldn't wake up.  Once again we made it through that day and have had better days since.  The Dr recommended we keep Gracie and Tyson away and not let her kiss him and be very cautious with his diapers and wash our hands really well and such because he got the Rotavirus which is a live virus and they drink it so it comes out in diapers.  We know all about being careful with diapers b/c Gracie's chemo comes out in her diapers.  We've got a Momma's boy and Daddy's girl in this house.  At least for now. 
He's cooing and talking more and more and he's now wearing mostly 3-6 month clothes.  I got a few pictures a few days ago that are super cute so I'll post a few below.

Clinic

Whew what a morning.  Woke up at 7:15...yes late I guess I was too tired to hear my alarm.  Even though I was only up once to feed Tyson after going to bed around midnight (the past 2 nights he has been sleeping one five hour block...so nice...I'm grateful although don't expect it to last) I was still feeling pretty exhausted.  Maybe it has to do with the fact that I finally got the garage all cleaned out and organized Monday so both cars could fit and got the kitchen cupboards organized too. Glad I was able to get it done though.  So I hurried to get ready and feed Tyson and pump before we were supposed to leave at 8.  No we didn't leave at 8.  I finally woke Gracie at 8 and tried to get her to hurry and eat (doesn't happen) so we tried to be patient with her while she slowly ate and put her numbing cream on her port and changed her.  I think we left a little after 8:30.  Todd drove separate so he could go straight to his rotation after since it's in portland and Grandma stayed home with Tyson.
About half hour into the drive I heard Gracie gag in the backseat and turned to look real quick and saw she had thrown up.  Since we were running so late anyway for her 9:00 appt and we were only about 10 minutes away and I HATE pulling over on the freeway something about it scares me...maybe the cars whizzing by at fast speeds (even though it wasn't too fast b/c of traffic...must of been cause there were SOO many cars).  As soon as I made that split second decision she started throwing up again and again and again and it was just pouring out of her mouth all over her shirt, her beloved blanket, the car seat...everywhere.  So I of course changed my mind and pulled over.  I scooped up the vomit that was all over her blanket and put it in the trunk dreading a tantrum begging for her blanket.  Got her out of the seat...tried to wipe the puke off her buttons so I could unbutton her shirt (they were COVERED...literally I couldn't see them) and took her shirt off.  One perk of her not having hair is that it didn't get all over in her hair.,  She was SCREAMING of course she was she was shirtless on the side of the 26 at 9:30 in the morning it wasn't too warm.  Then tried to wipe the remains from her face, hands and rest of her body.  I put her in the front seat and put a shirt on then tried to salvage the carseat so I could put her back in it.  We made it back on the road and to clinic.  We were all done with clinic by 11:30...I think the fastest ever...Until I went down to pick up her at home chemo for this week.  They told me that it was going to take several hours to draw up.  Are you serious?  Several hours...we are all ready to go home and you want me to go sit up in the clinic we come to every single week and wait for several hours?  Well after patiently making my way through the vomit and fighting off my exhaustion this morning I wasn't prepared to hear that.  I fought really hard to hold back the tears and my ever increasing desire to go find an empty room and just cry for a few hours.  I went back upstairs told Todd and got us a few things to eat including some ice cream with oreos which I decided would take the place of my good long cry and tried to think of good things about that day.  My favorite one was that Gracie only mentioned her blanket once and never threw a tantrum about it and instead carried the extra blanket of Tyson's I had in the car...luckily I had  that extra blanket there without planning. 

Getting chemo

Worn out on the way home

Luckily the nurses called down to the pharmacy and it turns out it didn't really take several hours to do as they told me...as I suspected (they just have to be so difficult sometimes) and it was done in about an hour.   We made it home without any more puking.  Probably due to the zofran they gave her IV before her cytarabine.  They said sometimes the kids get an anticipatory nausea b/c they know where they are going.  Poor thing, broke my heart watching her throw up so much and so scared sitting in the backseat by herself as it kept coming and coming. 
Her counts are on the decline...just as they expected. 

Clinic Stats

Weight: 32 lbs 11 oz

WBC:1.7

ANC: 600

HGB:8.4

Platelets:178,000

So far no fever...but I can't say there is no anxiety that there may be one soon as her counts keep dropping.  I think I finally got the mess all cleaned up and the car seat cleaned and put back together.  Hoping this anticipatory sickness doesn't become a regular thing.  Tyson's 2 month tomorrow and chemo in the morning.  Not sure I am liking this back to back Dr appt thing.  Last week I went to the dr wednesday after a LONG tuesday clinic.  I guess at least these appt's will be out of the way.  Hoping both kids won't feel too lousy tomorrow at the same time.   

Lessons learned

Turns out it is possible to be grateful for your trials while your going through them.  I have tried in the past,  but never been very good at it.  Now that it's been a very rough 6 months for our family and certainly the toughest I've had in my short 25 years, today I felt grateful for the person I have become through all these difficult times.  We were lucky enough to make it to sacrament meeting (not our ward...9:00 seems almost impossible these days) and as I sat there I thought of all the things I have learned and everything I now appreciate that I didn't before.  Then I had the thought (surely not my idea but the voice of the Spirit), what an incredible blessing that Heavenly Father saw fit to teach me these things at 25 instead of 40 or even later in life.  What a huge blessing for me to learn while my babies are 2 and 2 months how precious time is with them.  That some of the things that I used to think were a challenge and took for granted are really a blessing.  What a blessing it will be to someday drive to church together as a family and even if one of us sits on the stand for some reason like I often did at the organ I can look down and see that EVERY member of my family is there.  It's been almost 6 months since that's happened.  I now know that every phase comes to an end and stressing about it does no good...do your best and don't fight or stress over what you can't change.  Tyson was constipated Friday night and I was feeling pretty exhausted which is pretty typical these days and he was just so upset crying and I could feel my patience wearing thin and i just kept reminding myself this is going to end....sooner than I  know, and of course it did.  But before all this I would have gotten so worked up and thought it would never end (what a silly thought of course it will...)  I guess that's taken a lot of the Lord teaching me endurance to understand that.  If I can endure 2 1/2 years of horrible treatments for Gracie's leukemia and watching her suffer why should I make a big deal out of a few hours of crying.  It reminds me of  a quote in Elder Maxwell's book called "All These Things Shall Give Thee Experience" actually written by C.S. Lewis
"Imagine yourself as a living house.  God comes to rebuild that house.  At first, perhaps, you can understand what He is doing, He is getting the drains right and stopping those leaks in the roof and so on: you knew that those jobs needing doing and so you are not surprised.  But presently, He starts knocking the house about in a way that hurts abominably and does not seem to make sense.  What on earth is He up to?  The explanation is that He is building quite a different house from the one you thought of--throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards.  You thought you were going to be made into a decent little cottage, but he is building a palace."
Thankfully our Father in Heaven knows what He is doing and I'm starting to realize that He is going to build me into a very different house that I ever expected, but I imagine when he's done it will look more like a palace than I ever thought possible.  I have learned so much and changed in ways I never would have dreamed.  I used to think I was a pretty sympathetic person, when I heard someone had cancer or some very difficult illness or disease I really did feel bad for them.  But, I don't feel that way anymore.  I feel MUCH MUCH More.  So much more than I ever thought a person could feel.  This past week my Uncle was diagnosed with colon cancer...the same uncle whose familiy so willingly gave of their time, talents and more to organize and get funds for Gracie's Gang a 5K race put on in honor of Gracie.  Who knew at that time that they themselves would be welcomed into the same world we are now in.  When I heard about it I can't possibly describe how I felt.  How close to the surface my emotions were or how my heart felt.  Something I couldn't possibly have felt 6 months ago.  I wouldn't have known how.  But, my thoughts and prayers and really my heart is full of thoughts of them as they begin this difficult journey.  I draw much strength in knowing there are so many wonderful people in this world...angels from both sides of the veil that will be there with them through this journey.  People who will care for them as we have been cared for.  A Father in Heaven who will literally carry them when they don't have the strength and slowly let them down to learn what they need to in order to become the palaces he knows they can become. 
Although this year has been challenging and I've had more than one moment where I thought I can't do this for another second...I've learned that I can.  I can do it for another second...another minute even another year.  So I just wanted to thank my Heavenly Father for teaching me that today.

Other things

So I had A LOT more written on the last post and then had computer problems and in order to not get to frustrated at my lost work with such short time to document all I want to...I took a break!  Hopefully I can re write it again.  So we got home late and had lots to do including a sponge bath on Gracie and adding another dressing to where her port was accessed from her sweating it off as usual (to prevent it gettting infected).  I had a lot more anxiety this week with her port accessed I was worryign about her getting it wet or her drooling on it or her pulling it out or anything else a child under 2 might want to do.  She did pretty well although she absolutely hated changing her shirt or having her chest exposed ever or when the line would come out and we'd have to try to hide again in the ace bandage we wrapped around her to try to keep it in place.  She even would walk funny when she realized it was there for some reason.  She doesn't like knowing it's there. I learned how to give her her chemo at clinic and gave her iv chemo to her wed-friday.   Friday there was blood in the line and we weren't sure if that was ok or not b/c it hadn't been the other days so we called the nurse line and I tried to practice my best patience since i had a hair appt at 9:30 and she got up at 8:30 and we have to give zofran at least half hour before chemo and it takes about 20 min to give chemo and I had to deaccess her for the first time.  I got a call back in about 10 min so I was only about 15 min late for my appt.  Pros of being the one that gives her the chemo....oh wait there are none.  I guess you get to feel confident that your following the instructions they give you.  Cons...your the bad guy...and you feel really bad while she screams and cries because she doesn't like it.  Thankfully things seemed to go pretty well other than her not liking it. 
Other events this week:
-Tyson turned 2 months
-Todd turned 29
-Todd and I went on a date!  It was SO nice to go have birthday dinner and escape the stress and same old every day stuff.   Love the kids...love them more than anything but it helps me so much when I'm able to have a couple hours away.  I tell myself it's in their best interest when possible.  Thankfully Grandma was here to watch the kids...Gracie loves Grandma and we are so anxious and cautious about who we leave her with now. 
Here are a bunch of pictures from the last week or two!

Almost looks like they're mad at each other...Gracie doesn't like me to take just his picture in her chair...or any chair really.  She has to push her way into the seat. 

Cute little Tyson

Grandma and Gracie's matching shirts playing with her little people

Her new hat from Grandma Hurst

Tyson and I went outside one day and sat while Gracie and Grandma played

eating some chocolate pudding the night before clinic

This is how she says what or where?   She'll say Da all the time and then make that gesture and say "wh" for where's dad!  She is really starting to talk and communicate so much it is so fun.  One night she knocked on our door and when we let her in she said  door then knock then Grandma.  She was trying to tell us that grandma told her to knowck on the door. 

Tried to get a good picture of us last night...these are all the funny faces I got.

Yawn

That's her "cheese" smile I guess with her eyes closed

Now she's sleeping...We had So much fun watching her favorite part of tangled the "dance" part she like to watch it over and over and everybody dances.  Usually with dad but she wanted me to last night and we ran around with her on my shoulders and all kinds of fun dancing!

Bubbles!

Tyson ready for church !   Cute boy with Gracie's special bear:)

SO sweet if only he wasn't yawning

He is really smiling and cooing lately it is so fun. 

Maybe a little too close!

Clinic and chemo

Well we made it through the our iv chemo this week.  Tuesday we had clinic and got up about 6:30 to get ready for our 9:00 appt.  We finally made it home just long before 9 pm that night.  We were all pooped and READY to leave clinic.  But of course grateful in a strange sort of way that she was able to get the chemo after failing counts the week before and then failing the first test that morning.  It came back her ANC was 710 and needs to be 750 so the sent the labs down STAT to the lab downstairs and it came back quickly (shocking) as 900. So she passed.  She got a lumbar puncture (spinal tap) and methotraxate placed (glad we didn't have to fast for the 3rd time for this treatment).  As usual she needed a high dose of propophol to keep her from squirming so they can get the exact spot on her back.  After that more hydration and her two new chemos.  Then 4 more hours of hydration after the chemo to make sure it all went through her system, I guess cyclophosphamide can cause kidney issues if it doesn't run through their system.  Writing it out it doesn't do justice to how long it seemed to last.  We did lots of things to try to keep her entertained and of course Tyson had a MAJOR blowout and wanted to be fed many times and Gracie wanted to run around with her IV which of course needed to be plugged into the wall because the battery ran low while we she was satisfied watching movies and eating lunch.  The keeping her entertained and following her while she's hooked up to the IV with it pulling out at all and deaccesing is stressful if you don't believe me ask Grandma B.  Believe it or not our fighter fought out a nap until about 6 pm...then when she woke up she was not too thrilled (MAJOR UNDERSTATEMENT) .  She was pretty much really mad and as luck would have it Tyson refused to eat until she woke up super mad then he decided it was time to eat and was as mad as she was.  Eventually she calmed down and was running around playing while I finished feeding Tyson and then we packed up all our bags (we probably could have gone on a weekend excursion with all the things we had to survive the day plus the chemo and supplies we needed for our week at home)!  We were the last ones in clinic and it was after 7:30 by the time we had Tyson fed and started down to the car.  We got home and got a simple meal ready fed the kids, gave Gracie a sponge bath since she couldn't get her line wet and she stayed accessed until Friday.  Then we still had to work in her oral chemo (no eating for 2 hours before she takes it and an hour after).  We got it in I think around 11 I think.  Let's just say it was a long day... even though both kids were troopers.

Her nap around 6 pm after being at clinic since 9 am and being woken up early to go to clinic...and having a sedation.  She's pretty strong willed.

Sweet angel girl

Grandma (our lifesaver) and tyson (careful don't move him if he's sleeping unless you WANT to feed him so you can leave as  soon as clinic ends then he won't wake up until it's time to go and then he wants to eat...that's alright I assumed that would happen...worse things could happne right?)

Last weeks clinic

Well I never posted about clinic last Tuesday.  Maybe because I was too bummed and it would have been a major negative downer post.  Maybe cause I didnt' know how to express my feelings.  Either way it's been a tough week for me.  There have been some bright spots as always if you look but it took me a few days to see them and I've had to work really hard to constantly try to remind myself to see them.  Gracie failed counts last Tuesday which was quite a shock to not only me but the doctor and nurses.  Her ANC fell from 1100 to 500 from Friday to Tuesday and they appeared to be on the uphill they had gone from 1000 to 1100 the week before.  Her hbg was at 10.9 and her platelets at 275,000.  They were all slightly climibing except her ANC.  Tuesday I was way bummed...I had spent several hours packing the bags and the car getting everything ready for Gracie and Tyson to survive an entire day at the hospital.   Planning on 8-10 hours including needing her beloved foods for after sedation once she finshed fasting.  Went to bed late got up early....finally got on the road and to the hospital packed all our bags and kids in and they BOTH had poopy diapers but the clinic was full so we waited and waited for the bathroom to change Gracie because she had a nasty steroid/chemo diaper rash again and letting poop sit in her diaper is NOT an option.  Finally we started changing her in the hall and got just about done when they said they were waiting for us and we needed to hurry.  I grabbed Gracie and took her in and let Tyson and the rest of the stuff with Dad and Grandma.  We got the dreaded port access done (after a mild blowout fromTyson) and numbers came back...she had failed counts for the first time.  The Dr kept looking at them trying to figure out a way she may be able to pass...impossible.  So that was it.  Time to go home...but not without her 2nd favorite part of clinic deaccessing her port.  Second only to accessing.  She HATES it.  So do I.  So we'll try again this Tuesday.  Wish us luck.  Wish there was an easier way to get her numbers so we knew whether or not to bother going in somedays. 
Now that it's almost a week later I have seen the bright side on a few things.  She has felt GREAT this week.  I guess I forgot what a 2 year feels like off chemo and steroids.  She has been so happy.  And we haven't had to give her any drugs(although a mother never forgets the dread and anxiety of coming chemo or anything bad or hard for their child...it's always hovering in my thoughts).  And her diaper rash is looking a LOT better.  Grandma Bucher is back to the rescue.  I'm sure she's tired of us...well probably not Gracie and Tyson and Todd isn't here too much so maybe just me:)  But we're grateful for all her help.   And all the other help we've had.  Hoping the next 2 weeks speed by and she feels GREAT for her birthday and Halloween.  A mother can always hope right?