Better counts

Emily's itchy rash is all but gone and according to her nurse this morning her neutrophils  (stuff in the bone marrow that helps create and sustain the immune system) are at 400. 500 is considered as a functioning immune system. Once they hit 500 we should be able to be discharged. Hopefully sometime on Monday.

My Mom is coming to give Emily's Mom Kathy a break for a couple of weeks. We are so grateful for all that Kathy has done over these last few weeks with Jack. It has been more than we could have ever asked for. She will be back the last two weeks of August. We are excited for my Mom to come and I know that she is really excited to see Jack and how much he has grown and progressed since he was first born.

If all goes well we will try to make it to Boise some time this week to get away from Utah and the hospital. Emily will still have a weak immune system so we will have to be careful about crowds and such but if we play it safe we should be able to have some visitors and make some visits.

This week

This week was pretty eventful. So much so that I haven't been able to post much. This week Emily's brothers Joe, Matt and their families came and visited Emily and I. It was so great to see them and I know it boosted Emily's spirits to have some extra support so close. She even let me go golfing with Joe and Matt at the 9 hold course in Layton. Grandpa Wheeler was kind enough to let me borrow his clubs. We had a great time and I look forward to golfing with them in the future.

That same day I took Emily to the doctor for a lumbar puncture And some labs and she got a fever. Since her immune system is zero, she had to be admitted to the hospital. It was only a day early because they were going to give her a bigger dose of Rotuxin(which that part went just fine) but later found out that if she is admitted with a fever, they have to keep her in the hospital until immune system is back. So we are thinking earlier next week.

The next day her fever went away and Emily's Uncle Dave took me out for some Thai food and then took Joe, Matt and I to the shooting range to shoot his AR and some hand guns ranging from a 22 to a 45. It was way fun and s
Joe said that he could now cross shooting hand guns off his bucket list.

On Friday night Emily had a reaction to her antibiotics. Her body was completely red and raised and incredibly itchy. Turns out she may well be allergic to penicillin. They gave her tons of benadryl and hydrocortisone and that seemed to help the most. When you watch those survival shows and the people tap out on the first night because they are so itchy from mosquitos and you think, "It can't be that bad." I can tell just by seeing her that being in pain and being itchy are two completely different worlds of discomfort. And I think she would vote that she would rather be in pain that itchy.

Today (Saturday) her fever went down more and her itchiness for the most part went away but it left her really emotionally and mentally worn out. In some ways, today was one of the hardest days we have had. Juggling emotions of not feeling like we are being good parents, why is this happening now, when will this be over, why don't the doctors know more, does Jack think we are his parents even and if someone says, "it's going to be alright" one more time a chair is going through the window lol, it gets to be a bit much for the both of us.

But then we take a step back. We take a deep breath and gain some perspective it does end up being "alright".  The doctors are smart. The Lord knows what He is doing and Jack knows exactly who we are.

It helps much having family so close. Emily's Aunt Shirla and Uncle Dave came and brought us a ton of cotton candy! It probably won't last the weekend lol.

Low red blood cell count

Today we got to sleep in a little before we went to our appointment. They did labs on Emily and then asked her is she was unusually tired. Emily didn't think too much of the question but asked why. They told her that her red blood cell count was at 21. The average persons RBCC is 40 to 50ish. Lol so they are going to give her some blood on Tuesday. She had another lumbar puncture today and it went well. No headaches. She is pretty sore on her back but she is doing well.

I stepped out and met up with Ben and Devyn Ricks and their little girls when they were on their way to a family reunion. I got lost a lot and ended up finding them at the gateway mall splash pad. Their little girls are so cute. Devyn gave us a huckleberry pie made from scratch and I have to say that it is the most well crafted, fresh, huckleberry pie I have ever tasted. Props to Devyn and her baking skills!

We also got a nice care package from our friends in Minnesota  (Jana and fam) your gifts were just what we needed and Emily and I love the sharp winter and fall clothes that you got for Jack. Thank you!

Lazy Sunday

Today we went to church for sacrament and they had transfered our records there already so that was nice. Then it was off to the hospital to get a neupogene shot. We were in and out in 30 minutes and that was nice.

Jack did so well today. His fussy time is between 9 pm and 11pm and we just think it's funny most of the time. Almost like he is trying to be mad but is really happy. His lip will get pouty and he will let out a yelp, startle himself, and the  look around for what made the noise for a minute for two. He also likes when Emily sings Will-I-Am and Britney Spears. Our lullaby selection spans from Black Eyed Peas to smashing pumpkins. Kathys singing of "stay awake" from Marry Poppins and "Hush-a-by Mountain" from chitty chitty bang bang is probably more soothing. Haha But I can't get the "I used to be a little boy... what I choose is my choice" out of my head when I hold him.  And thanks to Shelly's baby shower CD, whenever I see him in the morning, I always sing the "good morning son, I am a bird wearing a brown polyester shirt. You want a coke? Maybe some fries? The road beef combos only 9.95. It's ok, you don't have to pay. I've got all the chaaaaaaaange." It's just too darn catchy to resist.

The Bastians stopped by today and it was awesome to see them. We haven't seen those two in about 2 years. The last time we saw them, they were dating and it was at our wedding reception!

Emily got a super soft sweater from Erin Jensen that was highly recommended. Emily absolutely loves it! It's too soft to describe. Thank you for that! We also got Shelly's cool cap. I think Kathy put a picture of me on Facebook with it on. Emily really likes how breathable it is. It will be perfect for the hot weather now.

Monday Emily has her shot and her 2nd Lumbar puncture. Wish us luck.

Don't touch your eyes!

Lol so Emily has a scopolomine patch to help with nasea and they told her to not touch the patch and then touch her eyes earlier today. They were pretty serious about it too.

The nurse came in and was changing Emily's dressing and stopped and asked very seriously, "did you touch your eye?"

This is why...

It makes your pupil dilate like crazy!

Lumbar punctures and Ativan dreams

Today Emily was feeling pretty healthy in spite of 2am chemo treatments. The doctors came in and gave us the scoop on the coming weeks. Tomorrow we will be released in the late afternoon. On Sunday we will come back in for a neupogene  (sp?) Shot that will make her bone marrow to produce more white blood cells. More or less bring her immune system back. Then on Monday she has a lumbar puncture And then another on Wednesday. Thursday we will have another over night stay where they will give her a bigger dose of rotuxin and keep an eye on her. Then probably that weekend she will be back in for another 3 to 5 days of chemo. All of this is subject to change but it is what we are going off of right now.

She was really anxious today before her lumbar puncture. Really anxious. The night before, she was calm and then worked herself into a panic in a matter of seconds worrying about her procedure the following day. I can't do much to help her body heal faster but I feel like she really listens to me when I try to calm her down. She truly trusts my advice and asurences which helps her remember to take a deep breath and trust that everything will work out. And it always does. I'd like to take all the credit for her axiety leaving but the nurse gave her about 2 milligrams of Ativan before her lumbar puncture and it really helped.

It also helps with nasea which after getting sick a few times, they gave her more Ativan. I'm happy to say that she has been sound asleep for a good 4 hours. The nurse even came in to scan her wristband and Emily didn't move muscle when she lifted her wrist. She is breathing so we are good there. I can tell because she will start to snore every now and then. (She's going to kill me for saying that when she reads this lol).

I went to Deseret Book for a few minutes and as I walked around felt really lonely. I don't know a lot of people who know how I feel so sometimes it gets kinda lonesome. I said a quick prayer that I would run into someone I know to take my mind off of things. About 2 hours later I was eating at a food court and I see my friend Helaman. I haven't seen him since the night I graduated from BYU-I. I though since he graduated that he would go back to Mexico. Needless to say we had a lot to catch up on over the last two years and it was so good to see him doing well here in the states.

I told Emily about my experience and we concluded that if the Lord cares about my needs, as little as they may be, to have this miracle happen from one prayer then the hundreds and thousands of prayers that she is receiving everyday means she is in pretty great shape. Lol maybe that's the real reason she is sleeping so soundly.

We couldn't do this without your prayers and support. Know that your prayers matter to us however they come.

Here are pictures of Jack and an awkward painting in Deseret Book. They are just staring at each other with blank expressions. I think the caption should be " Did you remember the snacks for sacrament?..."

We all good.

Written by Emily:

Well today was a pretty boring day. Other than getting chemo and Jack and my mom visiting nothing really happened and everything is going good so far.
We are in the hospital for about 6 days and I'm receiving different chemo doses throughout the time here. This B cycle should be a lot easier than the first because I'm a lot healthier this go round - as I'm not bogged down by huge tumors and just having a baby.
Well that's about everything. Hopefully we don't have anything to post because that means that everything is going well and nothing big or bad is happening.
Thanks again for all the continued love and support of everyone! We really appreciate all the blessings that have been given to our young family during this time.
One final shout out to Cindy Lerma on her birthday today!!! She's the greatest mom, mother in law, and grandma that we could ever have! Thanks for all you do for us.

B-cycle

Today we got the MRI and the results were wonderful compared to the very first MRI. Our good friends Chelsea and Jeff came and visited and we wish them all the best in moving to Wisconsin for med school at the end of the week!

We will be in the LDS hospital for the next 6 days getting chemo. In Wednesday they will determine if she needs anymore spinal taps. She's feeling great and the doctor pointed out that she is healthier now than she was when they did the A-cycle. We are pretty optimistic.

Antelope island

Sunday we went to church
We took the sacrament and Emily pointed out that some how or another we have always had the opportunity to take the sacrament each Sunday. If you wonder if your prayers are being answered, that alone is a true miracle.

After sacrament Emily, Jack and I took a Sunday drive to antelope island. It was an underwhelming view but the company and the realization that we were a family on an outing of our own trumped the Garr Ranch.

Jack did awesome and he is eating a lot, pooping a lot and sleeping a lot. He is also wide awake and very vocal. Still not a big cryer, but he his sqwak is much more refined.

Monday we go to the hospital for an MRI and will be there for the next 5 or 6 days for chemo.

Nice break

Emily had no reaction to the rotuxin so they sent us home for 2 days for a break. We have really enjoyed not having to go back to the hospital for labs.  We don't go back until Monday so we are making the most of the uninterrupted time.

Today we had our friends come over and take pictures of Jack with us and it was so nice to see him all snuggled and half awake for everything. He was a champ while they took pictures and we are excited to see how they turn out. It sounds like we will get a link that will have the pictures on it.

This morning I was reading Emily an email and she told me to wait while she grabbed some lotion. Half way through I caught a strong whiff of her lotion. I heard "oh my heck...." I asked what was wrong and sarcastically said "did you grab the toothpaste or something. She slowly held up the small tube of crest toothpaste.  hahaha. I said, "well at least you caught yourself early..." nope she had finished both legs! Hahah we had a good laugh. I told her confidently that she will never get cavities in her legs.

In Emily's defense, there isn't much difference in texture between the benadryl cream and all white toothpaste.

Good news

Emily is graduating! Her dad called the Dean of the college and he worked it out so that she would get the grades that she currently has which are all "A"s. We were pretty excited about that.

Last night Emily discovered that her little hairs are falling out too. I suggested that we use duct tape but we settled on a lint roller. It worked like a charm.

We are currently in the hospital checking to see if she is going to have a reaction to the rotuxin. No reaction so far and it's been a few hours. It's either rotuxin or a bone marrow transplant. So we are hoping that this venture tonight goes well.

Home away from home away from home

We check in to the hospital last night around 6:30pm and didn't get out of there until 3am! Two bags of blood and 2 soccer games, 3 episodes of river monsters and a conan Obrien show later we got home.

They wanted another blood sample from Emily so we went in today and got home 3 hours later BUT other than that we had a great day with Jack. He is so sweet and his stomach is working overtime trying to catch up.

Surprising news break...word on the street is that Emily has 4 matches (The source said 3 girls and 1 boy)!

Thursday she will go in and get a tiny dose of the stuff that might have given her a reaction with all the headaches. We will be there over night and then released. On Monday she will start her B cycle for the next 5 or 6 days and then we will hopefully have 3 weeks of a break. 

Wigs, water and driving fast

Today we woke up early to go to huntsman and see a neuro oncologist. It took us forever to walk from the parking garage to the office that frankly reminded us of Gringots. We found our check in place and then sat for 2 hours while the doctor told us what we already knew.

That they were going to do the rotuxin on Thursday.

On the bright side we are as smart as the  doctors.  BTW crystal light carbonates your water. Emily found out the hard way when she flipped up her water battle and it shot out all over her lol.

After huntsman we went to LDS hospital for a check up and all was well. Emily got pretty down because there was a rumor that they would admit her to the hospital on Thursday and start the second round of chemo early. A little ice cream and a long walk around the block seemed to cheer her up.

Then it was about time for her wig and make up class. I was pleased to go with Emily although I didn't get a wig. The teacher was super quirky and really like Emily and I. And since I was the only boy in the room I was the scape goat on most jokes about men. Still didn't get a wig.

The wigs were ok. She looked awesome is all of them but she said they weren't too comfortable. If they were comfy they looked straight out of the early 90s.

We went home for a couple hours and got to see Jack in all his glory. Emily got a little sick after dinner and has had a bloody nose off and on for the last two days. It got pretty bad and the hospital wanted us to come back to get it checked out.

So we are now waiting on the labs to see if we are staying here tonight or going home.