Wow, we finished the first round of chemo! Home for three days now, things have been great so far. Blood work today was good! Dropping but slowly, no transfusions yet. It's not supposed to drop completely until around day 7. She is still on tpn (the supplement) until she starts eating normally again. Today was the first day that she actually ate pretty good...a whole hotdog minus the bun and a whole can of spaghettio's minus the meatballs. She's been drinking good, lots of water and orange juice. I'm also still doing the gcsf (drug to help bring back white blood cells). We go back Thursday for blood work and another dose of vincristine.
Hayden is doing really well, lots of energy still. :) she has to take lots of medicines now, she normally does pretty good with her meds but she hates hates one of them and screams and freaks out when it's time to take it. I'm talking freaks out, I feel like she's going to make herself sick from screaming so much, it's a bit dramatic. It's really not thaaat bad, honestly I think the colace is much worse (that might be bc it tastes like yager..I guess Hayden hasn't drank enough yager to realize how gross that flavor is... one day :P) This evening I mixed it with chocolate syrup and it seemed to help...we shall see, wish me luck!
We ran into our friend today from Austin that also has atrt, Nicole!! She is doing great! It makes me so happy to see her up and feeling good! It's amazing how much difference just a few weeks make!<~especially when part of that time is spent at home! She will start proton this week and will follow the same treatment plan as Hayden (we have all the same dr's..even the ones in Austin!) Please don't forget to keep all of our friends in your prayers while your praying for monkey! Nicole, Carlie(who btw is doing really good as well, finished her first rounds too, Jaylie (finished round two and doing good!) and Jaxon (finished round two, also doing good!). There are many more but these are the ones we see the most and know by name.
Started decorating the house for Halloween!!! Hayden says she wants to be a dinosaur for Halloween this year! I love this time of year! :)

Chemo day 4

Today was a great day! She didn't get sick at all and was in a good mood all day! She slept a lot though, and went to bed around 8:30...which is unusual for her as she's usually up til 11:30 or later these days. I'm sure she'll sleep more and more. It seems like most people are pretty impressed with her energy & activity levels..they stay high not only while receiving chemo but also benedryl, antibiotics, some anti nausea meds and a handful of other meds around the clock! She cracks me up, they'll be like okay we're giving her (or whatever) so she should sleep for a bit, we're like haha yea right..you can see in their faces their thinking silly parents, she'll fall asleep in no time..and then they are like dang, she really isn't going to sleep, in fact she's playing dinosaur. The only one that does get her is phenagrin. She had that again today during chemo and slept through it. When she woke I was waiting for her to get sick like yesterday but she never did! :) :) :)
Tomorrow is a rest day. I'm going to run home to sanitize everything and prepare for our return. Chris has to leave Sunday (sad face) and he's going to take Sasha back home with him (another sad face). We just can't take any chances, although Sasha brings us all great joy we just can't risk having the litter box around. There arent many reasons to be happy that we are so far away, but I think it's a blessing to have our apartment here which is free from dog and cat germs and probably a billion times cleaner than our house at home. Thank you to our family for helping us with that(among countless other things), our "Houston home" is a little safe haven; a home away from home! We have the best family and support groups! I just don't know how we would do this without all of you!Every person in our lives has been a godsend and we love you all so much!
The worst of this stay is over, it wasn't perfect but it wasn't terrible either. Like I said, Hayden has thrown up before, this time it's because the bad cells are getting attacked and killed and not bc the bad cells are spreading like wild fire attacking everything in their path..when you look at it that way, chemo doesn't seem so bad and we basically sailed through this round! Fight fire with fire, and lots of it!! Hayden is superhuman strong (especially for a 3 yr old) it's hard not to think that some part of her wasnt built for this fight. She was born ready! I'm so proud of her strength, her fight, her endurance, her stubbornness and her willingness and desire to stay happy & laughing through this all! She s such an amazing little girl!
She still has the transplant on Friday! It's possible to have a reaction to the preservative in her cells, but that's not usually so bad and since they are her own cells it's not likely her body will reject them but these things can be crazy..I doubt it though. I just know she's going to do great even if she does smell like cream corn dipped in garlic. (doesn't really sound to bad to me but everyone keeps saying it like it's terrible..We'll see) The whole transplant is really cool. We are very lucky to have the opportunity to do it. They don't do it everywhere. I always though a bone marrow consisted of sucking out the marrow and injecting new (donated) marrow into the bones in a very painful operation. But no, it's not like that at all. Whether it's donated o your own (in hay dens case, her own) it just goes in like any other transfusion. After the stem cells are placed she is given a drug to help them multiply. There is no crazy sucking out of the old Marrow, for Hayden (and pretty much anyone receiving a bone marrow transplant) there will basically be none to suck out anyways. the cells have to go in bc there will be none there, her white blood count will literally drop to zero. Scary and pretty crazy. All is well, we'll keep her super protected from germs while she has no defenses.
Every day we get closer and closer to the end of treatments! I'm so excited that everything is going so smoothly! We have been so blessed and are soo lucky to live so close to Houston, where the magic happens! Which reminds me, a nurse told me today that nurses in Houston get paid about 10$ more an hour than Austin.. Yikes!! I'm not moving to Houston. I'm just saying...
Good night all! Keep Hayden in your prayers, it's the most important thing you can do for us!!

Quick update

It's cytoxin that she has to pee every 2 hrs with. so last night we had get her up and have her go around the clock.. She was great about it! I'm so proud of her! We're all a sleepy this morning but nothing that a little (or alot) of coffee can't fix! :) two whole days of this...they keep her full of fluids so really it's no biggie.
Shes in a great mood right now and is asking for French fries! She is currently poking chris's eyes out (he won't stop messing with her) they are reading spalt the cat and making silly faces!!
The nurse this morning said that this day is usually better or the same or yesterday, that's great news!! I feel like yesterday went pretty good!
Annd we caught the rash in time!! It's a tiny bit red but has definitely improved and isn't itching her!
Ariel is at toys r us searching for kitten...I hope they have one!! I think I can order her online if not, Hayden thinks she went on vacation and that seems to be fine for right now. While kitten is on vaca kitty (kittens sister) came to keep her company.


Annd my sister just walked in with kitten!!! It's going to be a great day!!

Chemo day 3

Its day 3 at the hospital, day 2 of chemo. Yesterday was a little rough, she got sick about 4 times and had diarrhea all day :( I wasn't expecting her to be sick the first day. The good thing was that it came and went really fast. She wasn't nauseous the whole time. It would just come over her really fast, she would be sick a few times then it would pass. I don't think her belly was feeling amazing the whole time but I don't the room was spinning either. Honestly the diarrhea probably felt kinda good since she's been backed up for months. (that might be tmi but this is as much a record for me as it is for y'all) She didn't eat or drink anything yesterday after the chemo stared but before she ate mashed potatoes, a piece of bread, French fries and a bun from a mcdonalds cheeseburger. I think her body was storing some energy. Yesterday there was a lot going on. She had one drug run over 6 hours(cisplatinum~ makes her feel yucky), one that ran through iv in a bag that they just hold up, probably took about 5 min, was the first one to go in (vincristine~ no immediate side effects) and another that is actually a protectant but with nasty side effects that she to do twice (amifostine~ immediately drops blood pressure, makes her super nauseous & sick,she also hates it bc she has to lay flat for twenty min while it goes in...the effects are immediate and last the whole time and about 30 min after. Blood pressure, however, goes up in about 5-10 min. Well it did both times yesterday, they are ready if it doesn't..) chemo started at 2 and was over at eight. Her line still isn't working properly... Oh I guess I forgot to mention that...they had to put in some kind of med that dissolves clots cause they think there is some kind of flap over the line..the med didn't work but if she lays on her right side with her left arm over her head, elbow bent blood flows great. It doesn't seem like a big deal but they draw labs every 2 hrs around the clock..pain in the butt. (It seems to be working much better today however.) Also, her favorite little kitten got mixed up with linen... She's been asking for her all day:/ they called down to laundry to see if they could find her..no luck yet. She slept really good last night and woke up feeling this morning! She didn't feel like eating or drinking until later this evening but was playing and doing good for most of the day. The drug she got today(remember we were told really makes you sick) cytoxin or cyclophosphamide ran in over an hour. I didn't want a repeat of yesterday and since it was pretty For sure it was going to make her sick I had them give her phenegrin(anti nausea that knocks you out cold) about thirty min before they started the chemo. She slept through it then for an extra 30 min. She woke up got sick, got more anti nausea meds and as been good ever since. :) BUT they changed her dressing for her line and some stupid idiot put something on her skin after I said repeatedly not to do anything extra, just betadine and the dressing. They never listen. So she started having an allergic reaction to whatever it was..oh but it's just a skin protectant blah blah blah, I'm like I don't care what it is, if I say don't use it,then don't use it! So i changed the dressing since they obviously are incapable of such a task, and they gave her benedryl..Im praying this takes care of it. These rashes get crazy out of control and are so miserable for her :( with everything that's happening we don't need a freaking crazy rash that itches so bad she can't even sleep!! Ah, are you kidding me!!! Anyways, she ate m&ms, a chicken nugget, 6 gold fish, doritos, French fries and has been drinking sweet tea this evening!! So awesome!! Today was good! She still has energy and I'm glad she's eating. We're all doing really good keeping smiles on our faces and being strong for Hayden, I'm proud of us. I wanted to flip out about the rash...but I didn't..i left the unit and called my mom screamed & cursed then came back like nothing was wrong. It doesn't seem like a big deal in the grand scem of things but it's just something that we shouldn't have to deal with, it's completely avoidable and rashes are terrible. (apparently I'm not over it yet)
Blood work as been good so far, one dip in calcium but that's expected and was fixed as soon as it happened. It's funny how her blood counts are "good" they've been waaaay lower than they should be for the past few months bu not low enough for transfusions so that's good. They will be though and when that happens please don't get offended if I harrass you about your health, breathing on or around her and have you use Sanitizer in front of my eyes, and possibly not let you touch her.. Haha I'm kidding! Sort of.. :)
Tomorrow is cytoxin again. The second day of it, for obvious reasons, should be a little tougher but hopefully we can pull another day like today!! Keep the prayers coming!!
Go Team Hayden!!! Rrrraawwwwrrrrrr!!!!!

Chemo Day 1

Well day 1 consist of just fluids and antibiotics! Which is nice, we kinda get to ease into it. Tomorrow starts actual chemo. Tomorrow she gets cisplatinum, vincristine, and amifostine. Amifostine is some kind of protectant~not a chemotherapy drug. With the vincristine she will have to pee every two hours...that's gonna be tons of fun trying to make her pee that much, haha, oh boy. Tuesday and Wednesday she gets cyclophosphamide and mesna. Mesna is a bladder protectant. It seems that cyclophosphamide is the big one with nausea and tends to make them sick more so than the others (not that the others can't or won't). But in addition to these they also give her medicines that help with all that. I'm not too worried about it, if she does start to feel yucky we'll try some other meds and get her all fixed up! A little nausea now for a lifetime of no cancer is well worth it. Other side effects include hair loss (no biggie...although I am fond of her little whispies) constipation (nothing new for her) diarrhea, blood counts dropping to zero, tired/weak, high blood pressure, increased risk for infections, mouth sores, no appetite...wow, listing them like that sounds terrible, so I'll just stop there. Anyways, she is very lucky to be able to receive her own little blood stem cells back and a drug called gcsf (this happens on Friday and if all goes well, we will get released that day!). This will up her blood counts super fast and have her feeling up to speed in no time! Most of the weakness, infections, etc come from low counts so if that's under control we'll be good. Chemo is chemo, we all know it's very hard but we have to do what we have to do. I'm interested to see how much this actually slows Hayden down...she was supposed to experience extreme fatigue and even low blood counts from radiation. Anyone who knows us knows that did not happen! Lol! We're told to expect lots of transfusions during this time. Also should expect sometime after going home to be put on tpn, a nutritional supplement that goes into her line (this is bc the nausea, potty problems, and mouth sores push eating to the back burner).
So that's what's going on. Hayden is in good spirits and like always has tons of energy! She doesn't mind being in the hospital, she's getting used to it. Can't wait to be done with all this. Hayden is such a tough, brave little girl...we have to stay smiling and positive for her even when it gets hard. Everything is going to turn out perfect when this is over! I just know it!

I don't think I'm the best blogger.. I'll try really hard to post more... :)
A lot of things have happened since my last blog! We went back to Austin for a week and were supposed to start chemo last Thursday, but that got pushed back till tomorrow! While we were in Austin we had a benefit at Baker St. Pub and a Pageant benefiting Hayden today in Houston! The Baker St. benefit was lots of fun! We sold raffle tickets for a bunch of gift cards that were donated by friends, Baker St., and restaurants in the area! We weren't sure how it was going to turn out but it was a giant success and lots fun! The pageant today was put on by a wonderful lady who we don't even know! She puts on beauty pageants benefiting children's charities and heard about Hayden and wanted to do one for her! We didn't think we were going to be able to attend because Hayden was supposed to start chemo last Thursday, but bc that got pushed back, we got to go!! And I'm so glad we did!! It was lots of fun! One of the pageant moms, who is very crafty, made Hayden a ton of hair bands with interchangeable bows & cute things and knitted hats!! One is a monkey!! How perfect is that!! Its so amazing to see how kind and selfless people can be! Puts a big smile on my face! Hayden became a Forever Angels Lifetime Queen, and got her own sash and beautiful crown!! So cool!
Since we didn't start chemo as planned (which I have to admit at first I was upset about it, I mean I have been mentally prepared to start that day for a few months..it was just kinda like What?!? but honestly how can you upset about having a few extra days!) Chris and I decided to spend the weekend as if we were on a mini vaca! Chris took off time to be with Hayden during chemo, so we were all together.. We were going to return to Austin for the next few days but the smoke in Austin is increasing and air quality is decreasing so we didn't want to take any chances, especially since the collapsing lung issue (which btw has completely fixed itself, but you can never be too safe)! Anywho, we took a little trip to Kemah Boardwalk, a little town about 45 min away, with a super cool little coney island type amusement park on the boardwalk. We had a blast! Monkey loved the ferris wheel, carousal, airplanes, and just spending the day hanging out in the beautiful weather watching the waves! Will definitely be going back there! Then Friday we got stuck at the dr's for a bit bc her central line wasn't drawing blood! I was like oh hell no, that would be a really bad thing..worse case: it slipped out of her vein and would have to visit OR again. But it was just being finicky (like the person it is on) and started working! Thank god!! We got out a little late but had promised to go to the zoo, so we did! Saw the important things..elephants, all the cats, giraffes... but I still haven't seen any zebras there, whats up with that? Afterwards we treated ourselves to Pappasitos!! Delicious! Today, Ariel came back to Houston (she's my guardian angel and is going to stay with monkey and me for the rest of treatments) and my dad came along to visit for the day. We loved Pappasitos so much yesterday we had to go back again today! (fyi..the pappas restaurants originated here in Houston and they are everywhere..its hard to resist!) We had a great weekend, I'm soo glad chemo got pushed back! :)
I wish it didn't have to start at all, but it does. So tomorrow is the big day. We don't know for sure what time yet bc they still don't have a room..which is why it got pushed back in the first place, they had too many kids on the bone marrow transplant floor.. they can't mess with the ones that are supposed to be starting their second or third rounds, but bc monkey hasn't started yet they are able to change the schedule up a little.. this is fine with me as I'm sure next month when Hayden has to start exactly 28 days later another child will get pushed back a bit. All of the little ones we know that have gone through their first round have done really well so far and we have high hopes that Hayden will too. Like I've been saying I'm going to remain positive and think the best! I'm using the things from the book The Secret... I know some of you thought I was crazy the other day when I was practicing my secret things with the MRI.. but it worked! So my new thing that I'm willing to happen is Hayden 5 years from now (with her big beautiful eyes and long hair) getting a plaque (right now its from Lance...its my vision, don't laugh) that says AT/RT survivor!! There is a big crowd and everyone is celebrating Hayden beating this monster!! Yay! It's going to be so awesome! I can't wait, it's going to be one hell of a party! :) Besides that, we're just going to take it one day at a time! Keep Hayden in your prayers! Last step of treatment guys!! Hayden has already gone through brain surgery and 6 weeks of radiation~ I just can't believe how amazing she has done and that we are 2/3 of the way done! 4 months and we'll return to the normal chaos of everyday life! Ah, I can't wait!! :) I will do my best to keep everyone updated! XOXOX