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.

Drink more water

Today Emily woke up so tired and dizzy. She was really hot with all of our blankets last night and was worried that she had a fever. We hurried to our appointment and turns out all she needed was more water. They told us yesterday to drink at least a gallon and a half of water. I think she had a half gallon maybe.

Today she committed to drinking more and more water and hopefully that helps her tomorrow.

So they hooked her up and gave her some fluids and she perked right back up with a nap. We have an appointment tomorrow bright and early with huntsman and then it's over to LDS hospital for another appointment. Then at 2 she has a hair and makeup seminar thing that her and her mom will go to. I'm sure they will take lots of pictures there.

Our address

We will be staying at Emily's grandparents house for the next few months.

Our address is

2558 W 1275 N, Layton, UT 84041

Sunday

Today we woke up early and went to Emily's appointment. They just did some labs and gave her a shot. We got there just in time to get the sacrament from the missionaries. It's always a special time in a hospital taking the sacrament. I like the comparison to the church and a hospital. Everyone is sick in their own way, searching and healing according to their needs. So we can't compare ourselves to others in the church because they have different struggles than we do. It makes as much sense as judging others in a hospital for having a cold when you have a broken leg.

After the appointment we went to Target just in time to see this lady pull over in front of us in the parking lot and start throwing up! Emily was very glad she had a mask and I wish I would have got one too.

Sarah, Matt and Tenison visited and it was really good to see them. They are always a blast and they even took some stuff home to Boise for us. After they left we all took naps as best we could. Emily was feeling a little blue but she has more right than anyone to have a low moment. Once we bathed Jack and had snuggle time with him, everything is turning around.

Freedom from the hospital and hair

We are free from the hospital and free from hair! We cut her hair early this morning and it went well. She only cried once before we even started. She's beautiful without hair. We got out of the hospital for the first time in forever and it was great to have Sarah and Matt there to help us celebrate! We even had the first nurse who admitted us be the one who let us out :)

Emily has a TON of pills. The hospital gave us a lot of free ones and a little pill box that puts the grandparent's ones to shame. Hers is on the left.

We will be back to the hospital everyday for check ups but we get to sleep in our own bed. Next Tuesday we are meeting with another doctor that will decide if she needs another chemo on Thursday of next week. 

Thank you for all those who have been patient with me and my late posts. Life is busy and I definitely have priorities before blogging. For everyone else, please be more patient. The posts will come.

Progress

Today Emily had  .21 % chemo left in her. She needed .02% to be sent home. We were so close! So Saturday should be the day she gets to sleep in her own bed again.

We got most everything moved in to the Wheelers from Rexburg so it will be an easy transition. Jack is doing well. He's a little sore and we can tell he's uncomfortable some times. We like to think we know his hungry sqwak from his hurt one.

We spent the day with Kelly and it was a good time.

Emily has to meet with the Nero oncologist on Tuesday to decide if they want to give her the same chemo that gave her headaches. It's a good risk to reward ratio. The stuff she may be allergic to is the most effect stuff against what she has.

We learned that Julie and Sadie are matches for a bone marrow transplant  (if needed as a last resort). So that's good :) we are also waiting to see how Tyson's test turns out.

The paper doll is a marker for how much you have walked today.

Good things to come

Some times I really feel that this experience sums up what I am personally going through in all this. Some wonder why I haven't given up or mentally snapped lol. The reason I am doing as well as I am is the primary message of Elder Holland's experience. Whether you are religious, or simply a believer in doing what's right, you will understand me better by watching this video. I hope it brightens your life as it has mine.

Good things to come video

Everything we own in a box to the left

Yesterday and today we packed the apartment. I got everything organized with the wonderful help of Brad, Rick and his wife Erin and put away everything only to realize that I had no clothes, blankets, food, and cups. I wore swim trunks and wrapped up in a small throw and watched the recorded battle bots episodes that we had on our DVR. This morning we got our moving truck, lift and other needed items.

My goal was to have all the heavy stuff done with before Emily's Dad and sisters got there. That goal was reached with the help of some of my residents, Christian and Ben. I was so grateful that I paid them in frozen steak from the freezer. Better than money any day.

Rick put our couches up on the Internet and a couple came by and picked them up. They didn't pay us for them but they did come and get them which was nearly better than money.

Thank you to Amber and your kids for letting us store our stuff at your place for the time being. It helps us so much!

Jack is doing great and down below is a picture of him and his mom for the first time in nearly 3 days.

Jacks doin fine

Today around 3ish Jack had his procedure done. It kept getting pushed back further and further. But eventually they did it and it went very well. He is eating again and is very happy. Thank you to Kathy who stuck with him during this awful time. We couldn't have done it without you. Emily is doing good too! Tomorrow is her 24 hour chemo-athon. It's an intense one that they have been prepping her for the last few days for. After the 24 hours they will give her the antidote to the chemo and they will start flushing her system. Once she has recovered, they will let her go home for a few weeks.

I am in Rexburg packing the apartment up. It is quite the process but Rick, Erin and Brad lent a hand tonight and I don't know how I would have done it without them. Amber, good friend of ours that lives in Rexburg, is letting us store a ton of stuff at her home until we figure out what to do with it. We are so grateful for her generosity. We are also thankful for all the prayers and best wishes being sent our way.

Jack is calm and apparently fascinated with this mobile in his crib. Also there is a picture of how I felt when Jake left for Boise. I'm sure the feeling was mutual.

180 degrees

The plan today was after Emily's, MRI which turned out to be amazing, and a blood transfusion we were doing to take some family pictures. My good friends offered to take pictures for us. Emily was feeling good and all was well.

I was on my way to Layton to clean up and shower when Kathy texted me and said that she was concerned for Jack because he was throwing up a lot right after eating. So we called the clinic and they told us to check into the ER at primary childrens hospital.  Turns out that he need surgery to help food move from his stomach to his intestines.

It's a common procedure and he will recover from in a week or two but will be able to leave the hospital the next day.
Kathy is going to stay with him over night tonight. He can't eat until the morning so my thanks and prayers are with her. She's awesome and had such a great intuition to get Jack looked at. So now I have my wife at LDS hospital and my son at Primary childrens hospital lol. I'm wondering if I should just go to the nearest hospital and check myself in just in case I'm next. It's stressful now but in the big picture everything will be fine.

4th of July

Earlier in the morning, I picked up Jake and Jack and we headed back to the hospital for the day. It's been fun having Jake here to help out and help take our minds off of things.

We had a lot of visitors and it was great to see everyone who came. We saw our friend Margaret in the morning and caught up with her. She gave Emily a pep-talk that really helped her out. She also brought some cute clothes for Jack and Emily.

Dave and Shirla Wheeler visited along with a surprise visitation by my brother in law Kenley who was passing through to pick up his car. My sisiter Kristin said to keep an eye on him in case he wanted to take Jack with him and then he later explained that he would give him back when he got expensive haha.

Jake and I went and ate at a Korean restaurant and had glorified bacon and all the fixings. The waitress woman loved that I spoke a little Korean and offered to make Jake and I "better food" at her and her husband's house lol. I love Korean people and their food.

Jack has been spitting up a little less frequently but I think it's just a baby thing. He doesn't have a fever and only gets upset when it comes out his nose. Once we use the little sucker thing, he smiles and all is well in the world.

Emily's hair is starting to come out. Strand by strand. Fortunately it's not in big patches. It is yet to be determined if and when we will shave it all off. She's holding out for family pictures with Jack on Monday and then we will see. She didn't get chemo on the 4th which was a nice break and her body is holding up very well. No blood transfusions yet which after so much chemo is a miracle in and of itself.

She still has some headaches most of them are caused by the chemo. The nausea being bad is an understatement and she is on anti nausea meds pretty much all day everyday. She took some that knocked her out about 8pm so Jake, Jack and I prepared to go back to Layton.

Jack spit up while in his car seat so Jake and I cleaned him up and it was this weird flash back of memories of Jake and I doing crazy and silly things together in high school. Now we are cleaning spit up, feeding, burping, changing diapers, and baby clothes together. I'm really blessed to have such a great friend and brother like Jake. And if you can't picture the two of us doing all that stuff together, we did have adventure time playing in the background while eating loads of candy after playing Mario cart Wii. Some things will never change.

With Emily asleep we drove back to Layton and watched the countless fireworks going on all around us on the freeway.

The nurse we needed more than wanted

Yesterday morning Emily and I were woken by our Nurse we will call "M". She is tall, 50s, buzzed short hair and if you closed your eyes as she spoke you would swear it was the lady from True lies. In short, she told us that the other nurses were great for telling us our baby was cute and brining pain meds but she was there to help Emily survive to take care of her baby. She's been a nurse on the floor for over 26 years and from the sounds of it has seen it all. Her montra  is eat, walk, and breath. That's it. She scared Emily a little bit and it was like watching those scared straight prison tv shows, hospital edition. Needless to say, Emily ate a ton yesterday. Walked more than she has in a week, her headache is gone and she biked 1.2 miles!

I told Emily that I really liked "M" because it took the responsibility off of me to be the whip cracker and would allow me to just be more of the hand holder. We have this nurse for the next 3 days :) she also debunked a lot of the myths that we were told such as.

Emily is toxic while on chemo and can't hold her baby.

Her tears and kisses are toxic and can hurt anyone

Jack can't be held by her for 24 hours (skin to skin)

No Jamba juice etc.

She looked like she wanted to wring the other younger nurses necks lol she was way annoyed that we had been told all that.

My best friend Jake made it into town yesterday night. It's so good to see him and I can already tell that him and Jack are going to get along just fine. He will be with us for the next day or so.

Thank you to Dave and Shirla Wheeler for letting me come over and shower the other day. Emily ate quite a bit of your pasta you made too!

Jack is doing good and has been spitting up a lot over the last day or two. We think it may be the formula so we are going to try the other formula from Costco for a few days and see if that works better. Poor guy. Still super cute. Jackie came and visited us yesterday too and it was fun to just talk about whatever for a while.

Jack's two week visit

Emily is feeling good aside from getting sick twice today. The much promised pain killer med button was taken away today because she "didn't use it enough" lol. We didn't think she had chemo today but since she was in the ICU, her schedule was pushed back to today. She will get chemo today, tomorrow, Sunday and I believe Monday. We get the 4th off so that will be a nice break.

Kathy and I went to Jack's two week appointment today and it was crazy complicated to get there. We both felt like we had to find our way through two airports. The doctor was very nice and Jack was a champ. He now weighs 7lbs 3 ounces! He continues to grunt and sqwak but just a little louder. The appointment went great other than them having to pick his heal and squeeze blood out 4 times. What the heck? What is the point of that? To show they aren't robot babies? I can understand once but 4 times felt accessive.  I guess in Utah they have to do it 7 times. Yikes.

Back in East 8

Today Emily was released back into our little abode in East 8. We were pretty excited to get back but met some amazing nurses and doctors in the ICU. Emily still gets to gave her little pain med button but she hardly needs to use it.

We also got to spend some much needed time together with Jack. That was a lot of fun to snuggle with him. Emily still had some chemo today and might still have some tomorrow as well. If all goes well, we will be out of the hospital for a few weeks on July 12th or 13th.