Day -2, -1 REST DAYS

I think that "rest days" is a little bit of a stretch! We still had the normal meds and doc visits, and mouth care and all that good stuff - just no chemo and I dont think that any of us really got any rest :) Still things are still going well - clipping finger nails and watching TV. Does it seem that we do a lot of that? YES, yes it does.

Look - twins :) Same head tilts, same dazed and vacant eyes. Spiderman again. Yes!

" But I am really happy guys!" The couch has been a fun place to play and take a break and we love our view.

So on Thur at the end of the second rest day (-1) Kendra and mom (Ruthann) came down. They were supposed to bring the girls with them but Kaitlin was up all night the night before throwing up. Mean ol' virus. So they are just going to come down on Sun and we will celebrate the transplant and Hailey's 7th birthday! She is having a party on Sat and I will be expecting photos from our personal family photographer, Jen so that I can post some on the blog for you all to see. We are sad that the girls can't be here but...that's life. Thanks to Aunt Lisa who had to stay up all night with Kaitlin cause she woke up throwing up every hour and a half. At least she made it in the bowl every time. I am going to be staying at the hotel with Kendra and mom tonight and I am so excited to sleep in the bed. It really is Brent's turn for a huge break as he is an amazing husband to keep letting me sleep in the real beds and hang out with the fam! So Dave - when you coming down to take Brent out for some boy's time? Tomorrow is the big day! Love you all- things are going so great!

Day -3

Geez mom! Another picture? I love this look I am getting from my 18 month old. So this is our last day of chemo and it was another great and thankfully uneventful day! I love uneventful days where we are giving chemo. This one was a little scarier for me as it was a more harsh chemo than the fludarabine that he was getting the last 5 days. But he was a trooper and did great. We did double up on the nausea meds and that always helps him. We are just waiting and counting down. We fill our days with eating...

And watching a lot of TV. This stay it is Spiderman - all of them but especially #3 cause you get to see Spiderman a ton in that one. He has watched it like 6 times. Since I dont love it anyway I havehad to find other ways to fill my time. Aiden has also decided that he loves to be a night owl and stay up until 1 or 1:30 am. Killer for the mom and dad as we dont get any sleeping in with all the docs and nurses coming in. We are doing great and so glad that he is doing so well with all the chemo treatments.

Day -4

So the girls went home today. Aunt Lisa came to get them from PCMC and take them back to her house. It wasn't even too sad cause first of all the girls will be back on Thur with Aunt Kendra and Grandma Rutu so they can be here on Fri for the Transplant Day celebration! Also, Anut Lisa has a DVD player in her van that was really distracting. The girls were exhausted from their busy weekend and I wouldn't be surprised if they fell asleep in the van on the way back to Logan.

This is Monica. She has actually been our nurse for three days in a row! She is really great. We have liked having some consistency and Monica does an awesome job helping us and Aiden. Today was our last day of Fludarabine. He has done well with this chemo we even took him off the oxycodone and that seems to help him feel a little more with it. He also has some extra energy from the blood tranfusion.

Not only is Aiden a motzart but he is also a little artist. He loves to use the markers on the white board and he feels like he has some freedom when he can be down on the floor playing by himself.

Yay! Toys! We decided that since he hasnt had Child Life bring him in any toys that it was about time. He was also feeling left out cause he didnt get to go with the girls and do all the fun stuff. He really like to hit Daddy with the hammer :)

Today was a good day. Aiden had an actual bath in the bath tub! Which was kinda fun for him. He does have a little bit of a rash still that they have been treating with benadryl and some hydrocortisone. That and the nap from 7pm til 8:15pm had him outlasting me. I think that Brent and Aiden were up until about 12:30am watching Spiderman 3. I passed out around 11:30pm. But like I said before - Sleep is overrated, right?! Thank you for visiting. Please comment and let me know if you have any questions or anything that I should make sure to add to the blog. We love and apprecaite you all!

Day -5

Ok so today Uncle Jared and Aunt Codi and Grandma and Grandpa Welsh went home and the girls stayed here with Brent and I. So while Aiden was taking a nap we took the girls to spend some time with them. We went to Noodle Co to eat and then to the two-story Smith's Marketplace to find a twin air mattress for Brent to sleep on. The couch bed is ok for one of us but only if you us the back pad as the mattress - thus we needed another mattress for the floor. :) Mission accomplished. I also bought some salmon to make for dinner tonight. Brent ended up staying in the hospital with Aiden and I took the girls to the condo.

The girls and I went to see the Legend of the Guardians. We really liked it a lot. It was so good. We didnt get to see it in 3D but Aunt Codi says that it is really cool in 3D. Of course the girls have to choose which character they are in the movie. Kaitlin is Gelphie, the navigator and Hailey wanted to be the evil Queen cause she was pretty until she found out that she was evil, then she decided that she would be the Queen of the Guardians. At least we didn't have a fight about who got to be who.

And of course we had to have chilled junior mints. Cause they are DELICIOUS. I think I ate the majority of the box. But we had lots of fun.

Here is our dinner - salmon and rice. I sent this picture to Brent in the hospital and he was jealous. Not too jealous though cause he had turkey steak and curried rice for dinner. We are eating pretty well :) we brought the essentials from home (like turkey steaks) and we have come up with some pretty good things that we can make with a microwave, convection oven and toaster.

This is the girls and I in our jammies - we glutted ourselves on Disney channel (yes we saw a movie and watched Disney channel too) we also went swimming and sat in the hot tub. Brent's orders to us were to relax and to have fun and of course we have to mind the Dad. It was really nice to just spend some quality time with the girls.

Aiden did so great with all his meds today. He slept well for his nap and he and Brent had fun watching movies at the hospital. They stayed up late too cause Aiden is turning into a night owl. I hope that he doesn't decide that he wants to keep up that schedule after we get out of the hospital. We are doing great and had a really great weekend!

Day -6

So here are the morning meds (only the ones he takes orally not the ones he gets through his line). And he gets this many in the PM plus a few throughout the day. He is awesome at taking them all. He is such a big boy. Then we make sure to do knuckles after :) Plus he has mouth care 4 times a day. We use the pink sponges to swab his mouth with a special mouth wash and then use nystatin to keep the mouth sores down. He hasn't had any mouth sores yet which is great.

This is the cool mist that he gets. Mostly we try to keep it on him when he is asleep as he doesnt really love it when he is awake. It seems to really be helping and he doesn't sound very barky any more! The test results came back and it is still the rhino virus that is causing the issues. Silly viruses - too bad they havent found a cure for the common cold!

I love the jail pictures. This is actually funny cause he had a bunch of docs and nurses come in to see him all at the same time and I tried to put the side of the crib down and he wouldn't let me. Kinda like his safety net or something. He sat in the middle of the bed and tried to ignore everyone. I am so glad that he likes his bed.

I have to have my drinks out of a big boy cup like mommy and daddy do. We have found that he likes his soda flat and a little watered down. So we leave it in the cup until it's just right for him :)You can see how much better he is feeling today though!

Look who came to visit us today! The sisters. It is so fun to see them. They made sure to wash their hands and wear masks in the room. Of course they were excited that Aiden has Disney channel and play dough to keep them entertained.

Grandpa Larry and Grandma Sharen brought the girls and of course we had to play with the Iphone. Aiden loves the Iphone. He played and danced with Grandpa Larry for awhile. They were having a great time. Aiden has about a 45 minute window after he takes his nap that he is really happy then he is like "ok - I'm done" and he gets kinda fiesty and grumpy. Luckily everyone got here when he just woke up.

Jared and Codi got to be here to visit us too and they brought us special pictures from Mara and Branden so I decided to update the picture board and put it on the blog. Branden even put a poem on it for Aiden.

Where the Sidewalk Ends - by Shel Silverstein

There is a place where the sidewalk ends

And before the street begins,

And there the grass grows soft and white,

And there the sun burns crimson bright,

And there the moon-bird nests from his flight,

To cool in the peppermint wind.

Let us leave this place where the smoke blows black

And the dark street winds and bends.

Past the pits where the asphalt flowers grow

We shall walk with a walk that is measured and slow

And watch where the chalk-white arrows go

To the place where the sidewalk ends.

Yes we'll walk with a walk that is measured and slow,

And we'll go where the chalk-white arrows go,

For the children, they mark, and the children, they know,

The place where the sidewalk ends.

It was so great to see everyone and Brent ended up staying with Aiden while I went with the girls and fam to the condo in Park City. It was fun even if we didn't get very much sleep. I dont think that Brent and Aiden got much sleep either as he was up until 1:30 am and then every couple hours after that. Poor daddy.

Day -7

This is our sad, miserable boy. When the docs came in this morning they asked us how things went and heard is "barky" cough. The theory is that he may have some kind of virus (possibly the one he came in with last time we started chemo, possibly a new one) and that what happen is the airway constricts. So where the airway is supposed to be about the size of a nickel his is about the size of a pencil eraser (or smaller). So they took him down for x-rays of his chest/lungs and throat. They also did the booger suck test so they could see what virus we are looking at. He seems to be really swollen also and not interested in eating. The hard thing is that Aiden can't tell us what hurts or feels bad so we are just guessing on how to help him feel better. Another thing that happens with the constricted airway is that they don't like to lay flat cause it makes it harder to breathe hence the wanting to be held the whole night before.

So they will watch the airway thing very closely and they will treat it as needed. They are putting him on some cool mist treatment. He gets it through a mask we hold up to his face. He is actually doing pretty well with it - all things considered and it seems to be helping. He is not having any trouble breathing or congestion in his lungs it is all in his throat.

So - after all the excitement of x-rays and booger sucking and baths and no sleep the night before, Aiden passed out. He slept for about 3 1/2 hours. When he woke up he had peed out and he looked better. He decided he wanted to eat, finally and he seemed to be feeling a little better. They got the x-rays back and his lungs are fine, his airway is constricted but not so much that he is unable to breathe. They also found that his stomach was so full of air and gas that it looked like a balloon and might have been one of the reasons that he seemed to be in so much pain. And might explain all the burping while he was eating. :)

So after he ate and watched Barney and the Wiggles he fell back asleep, poor exhausted thing. He slept from about 4 until we woke him up at 10pm for meds then went right back to sleep until about 1am. They he was up and happy and wanting to eat and play and watch TV. Lucky daddy got to spend quality time. He is doing so much better! Feeling happy and active and playing, eating, etc. He is also sleeping comfortably and doesn't sound as "barky" Even the docs were impressed with how much better he is doing. I am just so thankful for the Priesthood and the blessing that Brent gave to Aiden at about 5 am last night and the faith that is out there that made that blessing possible!

He obviously thinks that he is so big and can eat apples whole! Crazy - he crawled to the couch himself and loves looking out the window in our room cause we can see the front entrance of the building with the fountain and all the people and cars coming and going. He were lucky cause last stay we could see life flight and the helicopter come and go and this time we get to see the hustle and bustle of the hospital.

Aiden did great with the chemo treatment today. No throwing up or side effects. They gave him some IVHG (gamma globulins) a boost for his immune system to help fight the virus, and a myriad of other meds for a variety of purposes and he is tolerating them all well. Blood pressure is great, vitals look good, O2 up, energy levels are good, white/immune counts down. They got the initial results back for the viral snot sucking test and it was negative for all the big bad uglies like RSV, Influenza and some others that are life threatening. They secondary testing that will tell us what virus he has won't be back for 48 hours but all the other viruses we can deal with. All great stuff! We love you all! Thanks for visiting the blog.

Day -8

Ok so after we got all settled in it was bath time. "Geez mom don't get it in my eyes". We have been doing sponge baths as it is really hard to have an actual bath with the dressing on his central line. Technically we could do a bath in the tub but then we would have to change the dressing everyday. That is just a lot of sadness for Aiden.

Watching TV while we bathe makes it go easier. The hospital has warm blankets and that is his favorite part of the whole process. While we are doing chemo they like to give baths daily so that the normal germs everyone has on their skin (staff, yeast etc) get washed away thus not causing issue for a boy who is this immune compromised.

This is Aiden's doctor. Dr. Mike Pulsifer. He is really great and one of the only docs that is "allowed" in the room. At least Aiden doesn't cry when he comes in. He is really great and very knowledgeable. I really appreciate that he is very calm and composed no matter what question or issue may come up. It helps me (as a parent) feel better and know that everything is under control and something they are aware of and can deal with.

So today started out really good. The chemo that he is getting for the next 5 days only runs for half an hour. So much nicer than the 5 hours for the last chemo treatments. He did really well through the chemo and of course had his normal hospital diet of spaghettios and vanilla yogurt. We did mix things up a little and drank Mtn Dew instead of Coke :) He didnt really want to sleep though. He didnt take a nap at all until about 5pm then he was really restless. He woke up after about 45 min and wanted to be held while he slept for awhile longer. At about 7pm he woke up and was really upset and wouldn't stop crying. As the night progressed he started to sound really "barky" like he had the croupe. They gave him some pain meds and that seemed to help a little but he was really sad and grumpy. He also didnt want to be put down. At about 12:30 am he threw up. They had already been giving him nausea meds so they upped his dose. He also looked really puffy. Needless to say neither Brent or I got much sleep as we were rocking Aiden all night in the rocking chair - not great for sleeping.