Mark 11:22-23

22 So Jesus answered and said to them,
"Have faith in God.
23 For assuredly, I say to you, whoever
says to this mountain, 'Be removed and be    
cast into the sea,' and does not doubt
in his heart, but believes that those things
he says will come to pass, he will have
whatever




"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary, and they shall walk and not faint."
Isaiah 40:31



"Thy light shall break forth as the morning, and thy health shall spring forth speedily; and thy righteousness shall go before thee: the glory of the Lord shall be thy rear guard."
Isaiah 58:8

John 10:10 "The thief (satan) does not come except to steal, and to kill, and to destroy. I (Jesus) have come that they may have life, and that they may have it more abundantly."


Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."


Exodus 23:25 "So you shall serve (worship) the Lord your God and He will bless your bread and your water. And I will take sickness away from the midst of you."


Malachi 4:2-3 "But unto you that fear (reverence, worship) My name shall the Sun of Righteousness arise with healing in His wings; and you shall go forth, and grow up as calves of the stall. You shall trample the wicked for they shall be ashes under the soles of your feet on the day that I do this says the Lord of hosts"


Jeremiah 29:11 "For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope


Isaiah 57:19 "I create the fruit of the lips; Peace, peace to him that is far off, and to him that is near, saith the LORD; and I will heal him."


I love all these! :)

Today was Hayden's "rest" day before receiving her transplant tomorrow. Had she not had the infection we would be going home tomorrow too. But it looks like we will get to go home on Mon the 31. Whew, this will be our longest hospital stay! The blood culture came back negative today for the infection! Two days straight! After three days of negative cultures they consider it resolved but we still have to stay at the hospital to receive iv antibiotics round the clock. She's been running a really high fever, coughing, & sneezing so now we might be dealing with a viral thing :/ She's been placed on isolation, she can't leave the room and when they come in they are wearing full head to toe coverage.. So they don't carry it to another child with no immune system. This floor is crazy, but it's good. It sucks that she can't go play and she was very upset about it ALL day! There is this train toy that you ride, that she loves, and she wanted to go ride it so bad. I feel so bad bc I know it sucks to stay in her bed all day and at least he was able to ride the little train around the floor. They will send out a nasal wash tomorrow to see what's up.
No throwing up today or yesterday at all!! Praise the lord!! :) even took her off Ativan today, and still none! On the other hand, these super strong antibiotics are making a mess of her little tummy, I actually had to put a diaper on her :( BUT she ate today! After 3 days of not even a single bite, she ate a whole bean&cheese taco, and later almost a whole ham&cheese sandwich! Sooooo happy!! Yesterday all her electrolytes, phosphate,& calcium were all screwy. She was retaining water and not peeing at all. (which is a problem in it's own but also she has to pee every two hours while receiving cytoxin) her eyes swelled up and she could bearly open them :( but they adjusted all her fluids, and everything has sorted itself back out. Her eyes look much better. Fever still persisting but isn't getting quite as high. The other night it reached 104.6
Her mood has been off lately, she hasn't been her normal smiley good spirited self. She's been really down:( I don't blame her at all, i just know she's so uncomfortable and I wish so badly I could make it better. I know she doesn't understand why she's so sick especially when we try to explain the medicine we're giving her is making her feel this way. It's just not fair that she has to go through all this.I hate that we have to do All of these terrible things to her. I hate that she has to be in so much pain and be so sick. I try so hard to stay positive through this but watching your baby suffer so much makes it so hard. I just don't understand why. I try not to think this way but as I'm sitting here watching her breathing so hard, tossing and turning, rubbing her head and belly and whimpering I feel helpless. There is nothing I can do to make it better and I get so angry and sad that it's happening at all. I just try to remember that this will be over soon and we have to do it. We don't have a choice, this is the only way to save her life. Obviously we would do anything and if this is what it takes we can handle it.
I think this round has just been so much harder for all of us. Tomorrow will be a better day. I'm sure of it! Please continue to pray for Hayden that she feels better, fever breaks, staff infection is completely resolved, there is no viral infection, her belly stops bothering her, the nausea stays away, she can get off of isolation soon, rest easily, and that starts to feel like her normal happy self soon. PrAy for her strength and ours to get through this.

Round 2 day 2

Good and bad news to report tonight. First the good: Hayden did much better with nausea today! Not nearly as much throwing much as yesterday, no blood in it, and she even got up to put on her T-Rex costume from grandma mullaney & take a trip to the playroom!!
Bad: the blood culture is positive for an infection :( very scary for us. You don't want to hear that your baby has a blood infection ever but especially not now. The nurse told us it's a staff infection and it's fairly common and easily treated, just means an extra 7-10 days at the hospital :(
Her nausea was better today but her fever is a little out of control. It hasnt been resolved yet and I know its draining her and making her feel more yucky than she should. Please pray that this infection is resolved very soon and she feels better in the upcoming days. Tomorrow is her last day of actual chemo for this round, I just hope she does well. We have to wake her every 2 hours to pee and it just makes me feel terrible bc she doesn't feel good, she's burning up and she doesn't want to go. She hasnt eaten or drank anything in 2 days and constantly has the hiccups.
I wish I had more positive things to report. She did just wake up and ask to watch dinosaur train and to color! Which is really wonderful except for the fact that it's 12 and we're exhausted! :) oh well!!
We have to remember that everything is going to fine. Hayden is strong and she'll get through this round and the next two. God is an amazing god and healer and is healing Hayden everyday. At times it might not some like it but we have to have faith that this is how it's supposed to be and that he is always one step ahead. If anything we can be reassured the chemo is working bc we can see the effects. We also have to remember that there are other forces out there trying to break our faith and we have to remain strong in what we believe.
Psalm 46:10 be still and know that I am god

Chemo round 2 day 1

This time hasn't been as easy as the last. Hayden was sick all day, and just exhausted. :( For the most part she slept but woke up 1-2 times an hour to get sick. At one point there was blood in her throw up. It really scared me but they did blood work which showed no signs of bleeding and are confident she just busted a capillary from getting sick so much. :( It just breaks my heart. I hate watching her go through so much. And it doesn't seem like any of the anti nausea meds helped. She spiked a fever so they changed all her antibiotics to really strong ones and are doing blood cultures to test for any infections. The chemo ended around 8 and since then she was only sick once! She's just been alternating between Chrs and my laps. I've never seen her sleep so much. I'm hoping she will rest peacefully tonight bc tomorrow is another long day of chemo and long night of waking her up every two hours to pee. The drug they give er tomorrow is notorious fr making the kiddos sick so I'm prepared for the worst but hoping/praying for the best. I know chemo isn't supposed to easy and all these things are normal but it's still so hard. I can't wait for this to be over and she'll be a "normal" healthy little girl again!
I'm thinking all her fuzzy whispies are going to fall out this round. Her little eye brows are almost gone :( I've gotten so used to her little blonde baby hairs that she's kept, I don't want to see them go. I started noticing her eye brows about a week ago, boy have they thinned out. I was looking at old pictures last night and man did she have some "wolfy" eyebrows as my mom would say! Hehe. They are adorable! I miss her long completely unmanageable hair too. I hope for her (and my) sake it doesn't grow back any thicker than it was! :)
We're just trying to focus on getting her healthy and try not to dwell on the times that she doesn't feel so good. Already one day down of round two with two days to go. And already almost half way done with chemo altogether! Thank you everyone for your continued support and prayers!

Time flies whether you're having fun or not. Not that we don't try to have as much fun as possible but it just seems like a few weeks ago we were moving down to Hoston. Now we have only 3 rounds of chemo left! And then it's nothing but clear skies and butterflies from there! Hayden will be all healed and we'll all live happily ever after. :)
Hayden has been doing really well! She's gotten sick a few times and seems to be sleeping longer these past few days but other than that has been wonderful! Her blood counts have recovered nicely and she was taken off the gcsf(drug to help bring blood counts up) and all the other meds ( including the penicillin that apparently tasted like poison). Since being off gcsf her counts dropped pretty drastically but that's normal and expected and were still at 2000 on mon. They started her on a new drug called bactrium that prevents a form of pneumonia that lives in the water/everywhere and if contracted is untreatable. Don't freak out it's extremely uncommon to get it if your immune system isn't compromised. So that has dropped her counts as well (I guess it's a pretty strong antibiotic...she only takes it 3 times a week and only when her counts are up enough to handle it). It's also most likely the culprit that's causing her to throw up the last few days :( I hate when she's sick. Hopefully she'll feel better the next few days since she will be off all meds til Sunday! FYI, her second round starts Sunday, remember to keep her in your prayers! Please!
Last week Grandma Mullaney came all the way from Buffalo to spend some time with us in Houston!! We had a wonderful time, it just went way too fast! Since we're not allowed to go out in public we just hung out around the house & watched movies. :) grandma got to spend lots of time with monkey cuddling, playing dinosaur, calling each other butt burps (hayden's favorite word..I'd like to blame that on Chris but she made it up herself..isnt it just wonderful) and playing games!! And by games I really just mean Dino puzzle or don't break the ice over and over and over and... Chris and I were able to get out together for a few drinks in the first time since I can't even remember. That was really nice! Lookin forward to seeing the rest of the family next month!
Hayden wants to be a dinosaur for Halloween, specifically a standing sharp tooth, aka a T-Rex. She's so cute. :) such a pretty little tomboy she is. Or monster, however you want to look at it. Another thing that cracks me up is watching her play with her cars and dinosaurs in her mermaid pony castle. Her hot wheels enjoy the slide as much as any pony! Haha. Shes a hoot. Till next time! XO

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!!