Update

We've been home since Monday and its been wonderful. 2 weeks in the hospital can really drain you! I'm definitely feeling drained lately. We've been sleeping much better but I still don't feel caught up. There is just too much going on! Today we got the "results" of her latest MRI. I say it like that because yesterday we got "results" that showed some changes but they didn't know what it was because they were just basing it off the radiologist's report. We were told it hadn't changed "that" much and Dr. Murali would look at the slides and get back to us. Isn't that nice? Yea there might be some growth or something changing but we'll just get back to you, no biggie. This is kinda what happened last MRI, except last time a Dr told me there was definitely something growing there and had me freaking out for days. If you don't remember from last time that "growth" turned out to be most likely scar tissue (most likely.. not to sound negative but they cant know for sure and that fact always makes me crazy.) Anyways, I tried not to be crazy this time and just stay positive. I'm trying so hard to have faith and not let anything get to me. If I know there is nothing there then I shouldn't be worried to death about the MRI's. ANYWAYS,  today the neuro-oncology team looked over the slides and said they didn't see anything to be concerned with. Dr.Murali is out of the office but he will look at them when he gets back for the final say. Dr. Murali is her oncologist~who specializes in brain tumors and has worked at TCH for 20 years and actually took part in a AT/RT study at TCH. But it looks pretty good, I'm thinking if there was something suspect the neuro-onc team would just wait for him to look at them before they said anything. Although this is good news we did receive a bit of bad news today...
It looks like there has been some pretty significant damage to her hearing. :( They monitor it very closely because this is common with the cisplatin. Right now its only in the high pitch range which you don't actually use for normal hearing and speech. That is really great news! But its very close to the normal range. I'm so scared that there will more damage to it and it will affect her normal range hearing. She still has 2 rounds to go and apparently the chemo lingers in your ears and cause damage for up to 6 months after treatment is completed. :/ Like I said earlier this is common and they can adjust the doses of chemo if gets really bad. Its not something they like to do but they can. Suzette said that right now they won't change anything, we have to weigh our pros and cons... hearing aids vs regrowth. Its a no brainer but doesn't make it any easier. Also trying to stay positive with this, Suzette says that a lot of times the kids hearing takes a huge hit then its not effected anymore with  remaining treatments. We can only pray. The unknown is so hard.
Ugh, its so hard to stay positive all the time. I think I'm going to take a solo trip to Austin this weekend to get away for a bit. Just the 2 weeks in the hospital was enough to make me crazy but I'm just tired of seeing the same walls everyday. All day everyday at the hospital, all night every night at home. I don't want to feel like this, I know this is all to make her better and it will be over soon. Its just very hard being trapped. We can't be in public at all, no restaurants, grocery shopping, trips to target, or anything. The only place we go to is a hospital surrounded by sick children all day, awaiting this weeks results... Hours waiting for labs to find out if her white blood cells are recovering or if she'll need a transfusion today. Waiting in fear for results of MRI's or Lumbar punctures, vision and hearing tests. Pleading with her to sit still and calm down for echos and ekgs, blood pressures and temperatures. Begging her to just take her medicine and not throw it back up, or actually eat something, anything. Listening to her scream bloody murder for dressing changes or baths, or anything she doesn't want to do these days. She has gotten into the habit of just screaming when she doesn't want to do something, like change her clothes, take a bite of something, walk. 36 lb. gets heavy after awhile. I'm whining. I know. I'm just tired. Three more months and this will be behind us. She will be all healed and the only thing I'll be going to hospital for will be the occasional MRI that will report nothing but good news for the rest of eternity.
Please pray that her hearing isn't affected anymore. That her body is protected from all the harmful side effects of these treatments, but that they do their job! That we can stand up and say we beat this monster! That her body recovers quickly from this round and stays strong for the next two. That she doesn't get another infection or fever and stays as healthy as one can possibly be during all this. Pray for strength, for Hayden and me, so we can continue this fight until we win this damn war. I hate cancer. I hate everything my baby has had to go through already and all the challenges and obstacles she will have to face in the future because of it. I hate all the pain and suffering its caused us and the fear, anxiety and uncertainty of the future that its brought for our family. Life isn't supposed to be this way. I know we have to continue to stay strong and have faith. I am and do. It's just time for a breather.

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