Home for a while

We are back and forth from the hospital for neupogene shots. It's funny that 3 hours spent at the hospital is only for a less than a minute shot lol.

Emily is doing well. The methotrexate is giving her pretty bad mouth sores this time around. We are all done with Chemo this cycle until next Wednesday. She will hopefully be admitted to the hospital for the last time. They still haven't decided on doing radiation.

We should have a consultation sometime next cycle with a radiation expert to determine if it's needed or not. All the tests that we have done have said that she is still cancer free so we are hoping not to do the radiation therapy.

Jack is doing well and we learned that peekaboo works with lower voices as well as higher pitched ones. So that helps me haha

I signed up for my last spartan race of the year. It will be in Red Deer Canada and will be the last race I need for my tri-fecta. Emily's brother Joe and sister in law Krystle will be running it with me and getting their Tri-fecta as well! So it will be a party. I will be there from the 10th through the 14th. Wish me luck!

Jack's smiles

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We are out of the hospital but we still have a busy week ahead of us. We go back in tomorrow for more chemo and a neupogene shot and then Wednesday is a lumbar puncture and a neupogene shot. Thursdays through Sunday consists of going back everyday for a neupogene shot until her counts(immune system ) are back up.

Jack is doing great and is smiling more and more. I attached a video that I hope works.

One of the pictures is of my Dad and I when I was about Jack's age. And the other is a drawing if Emily that her Dad did and one of her that her mom did. I will let you decide which is which.

Methotrexate stay

We checked in the hosptial and they gave her the rotuxin, which she had no issues with, and then she is getting a 24 hour dose of methotrexate. It should finish Saturday morning at 10am-ish. Then it's just a matter of letting her body flush it out of her system so that she can go home.

The goal is Monday but we could be here Tuesday at the latest. We will have to come in every day to get a neupogene shot and on Wednesday she has her last lumbar puncture of this cycle. The 1st and 3rd cycles are very drawn out without much rest between treatments truth be told if we had the courage to give her the neupogene shot at home it would save us from having to go to SLC every day. But neither of us can do it lol so the drive is worth it.

Jack is doing great and I have lots of pictures to prove it.

Relaxation and 2 month shots.

The last few days have been spent relaxing and taking Jack in. My Mom got home ok and Emily's mom got here with no trouble. We are so grateful for all of their help. Jack has started to smile a lot more and we can't get enough of it. Today we took him to get  his 2 month shots. I was worried because I didn't want to be there when they made him cry like the last time they had to take blood from his heel. Today he did amazing ! He cried initially but was soon fast asleep and he slept the whole way home. He got some pretty sweet bandaids too.

Emily goes in tomorrow for her methotrexate dose. This one is an in patient visit. She will be admitted tomorrow and then released when she clears it from her system. She is holding strong and is always anxious to see Jack and be together as a family. Away from the hosptial lol.

Out Early!

We get to go out of the hospital early this go round. We were planning on Tuesday but get to leave today after her chemo is done. We have had a good time with Jack and yesterday got to see his first real smile. It was quick but very genuine and j could tell it made Emily's stay here. We have appointments off and on this next week and on Thursday check in again for a few days.

We talked last night about the blessing of being cancer free so early in the treatment schedule. If she had been cured with one chemo treatment left, that would have been great but we take comfort in knowing that we have a month and a half of eradicating chemo treatments to ensure it doesn't come back instead of maybe one or two and then live guessing.

The rest of the week

Today they told us that as of now, a bone Marrow transplant is off the table! Woo hoo! She still has to do her treatments as scheduled but she can do it! Only 2 more lumbar punctures left! Dr. Hoda said that he threw an idea out there about cranial radiation to make 100% sure that the CNS disease was gone to the tumor boards. No one seemed too excited about the idea but his case is that since she has had CNS disease (normally associated with ALL) it would hurt.

It would be once a day for 10 days at a low dose or radiation from the neck up. He said that they are going to let it fester at the tumor board for a few weeks and then see what they say. Emily votes no. I would rather take the majority of oncologists suggestions on this one.

Jack is doing great and is some what enjoying tummy time. He's pretty aware of his surroundings and definitely notices changes and sounds and colors. So keeping him distracted seems to get easier each day. My mom is doing awesome taking care of him and we are so thankful for her help. Emily's mom comes this next Monday to take her shift and I know Emily is anxious to see her.

They told is that because Emily is doing so well, she may be able to leave on Sunday as opposed to next Tuesday. We are crossing our fingers for that one. Also I wanted to send a shout out to all our awesome nurses. We will have a post on them in the future.

Tonight our friends Ben and Devyn Ricks came and hung out with us. It was nice to have them here just  relaxing and talking about nothing incredibly important. It helped me take my mind off of being in the hospital. They are going to come tomorrow too for a little bit.

The A/C is busted in our room and I guess in quite a few other rooms. It's currently 81 degrees. They are working on it and we have our room propped wide open lol.

Victory

This morning Emily and I went to the hospital to be admitted into the hosptial for her 3rd cycle of chemo. She was pretty anxious last night about having the lumbar puncture. I don't blame her. They don't seem like the most comfortable procedure. I assured her last night that everything would go well and that she only has 4 left.

I wish my assurances would have worked better. Her lumbar puncture was pretty rough because they couldn't extract any spinal fluid from the first hole so they had to move up and do yet another lumbar puncture. Emily broke down in the procedure room that when the surgeon dropped her off you could tell that he was feeling for her.

We went to subway today (I caved because she had such a bad time after I told her it would go great) she wasn't knocked off her feet with flavor but she definitely had a craving satisfied. The nurse pretended not to see us as we slipped out to get the subway between her LP and checking into our room lol she was awesome.

Dr. Asch, our oncologist today, came in and told us that Emily is now in complete remission. After all the tests, they said that her bone marrow was as clean as a whistle and that there is not cancer detected even on a molecular level. So in a way Emily is healthier today that she has been in months possibly years because there isn't anything cancerous to harm her.

She still has to complete her chemo regiments so she will still get her next 2 cycles. Kind of a bummer. Emily would rather take her chances than continue and I don't blame her but she can't argue with the results. Dr. Asch said that ultimately the decision is hers to receive treatment. And if she gets the same cancer again because something was missed because she didnt stick to the schedule, then it would be on us. Better safe than sorry.

She also mentioned that a bone marrow transplant wouldn't make sense in Emily's case. Tumor boards are tomorrow and all the oncologists will discuss the next course of action for emily and let us know then if the transplant is round filed.

After the bitter sweet news Emily and I cried and then slept for what seemed like hours and hours. Mine was a lot deeper but Emily has been more or less out of it from the benadryl for the last 8 hours. Tomorrow is a new day with new challenges most likely. Yet there is an end in site that feels more tangible than before.

Home again

My birthday went great, my dad and I were able to go golfing and fortunately, through winning a bet on the back 9, I was able to keep Jack! Emily, Jake and I got some much overdue sushi followed by some pizza later that night. Sunday was a busy day and we had the opportunity to see lots of family and friends. Many saw Jack for the first time! It's good to know that by as many people who wanted to take him home, he is loved by others as much as we love him. In 16 years or so we may take a few of you up on that offer of having him so heads up lol.

Today we drove back to Layton and we're able to see Sadie and Matt before they went back to Canada. We made the connection that it's good to have a Sarah and Matt on both sides of the family. Sarah and Matt Warnick and Sarah (Sadie) and Matt Anderson. Also Kathy Lynn is a good one too I have an Aunt Kathy Lynn and Emily's Mom is Kathy Lynn. Great minds think alike don't they?

Tomorrow we start the 3rd cycle. They are doing the vincristine,rotuxin and lumbar puncture tomorrow. It will be an early, busy day. Emily is the strongest person I know and she can do anything she puts her mind to.

PS: Jack pooped tonight. Sadie and I gave Jack a good tummy massage and once he relaxed before his bath, a couple days worth of relief came with a vengeance.

Boise

Today we got up early and packed the car the kid and the Mother in law and took off to Boise for the weekend, my birthday and a chance for Emily to get out of town. The drive went great and Jack slept the whole time pretty much.

Sarah and Matt were kind enough to let us borrow their pack and play for Jack and he doesn't tell the difference between theirs and ours so that's good.

We just hung out and relaxed a bit. Emily is a little sore from her procedure yesterday but other than that she is doing just fine. We also got to see a lot of the finished newborn pictures of Jack that our friends took! They turned out amazing and I will have those to show everyone pretty soon.

Today went well

We got up at 6:30 am today and headed to the hospital for the CT, MRI, and bone marrow sample. The had to put an IV in Emily's arm for the contrast for the CT scan. We weren't to happy about that because she hasn't had to do that the last 2 times and we were assured that they could just use her lines. After that we finished up the scans and went to the clinic to see if we could get in early for the biopsy since it was 9am and we didn't have the biopsy until 11:30.

They said that they were pretty full and it would be best if we could just come back a couple hours later. We got halfway to the car when they called and said that the people before us canceled. So we went up and sat in a room for 2 hours until our regular appointment lol.

Emily was pretty distraught over getting a biopsy today. The two hours of waiting was just mentally tough. The procedure went great and the only part that hurt was just the numbing needle but, by that time, she was so stressed and anxious that she was shaking.

It took her a while to calm down once the biopsy was finished. We left the hospital around 1 ish and have spent the rest of the day just hanging out with Jack and my mom. We got an ice cream cake from dairy queen too so that was a plus.

Friday we are going to Boise for my birthday and to get away from Utah. We are going to keep it pretty low key since Emily is still recovering from the biopsy and getting her immune system back.

Jack's just cute

New information. The family members who are officially a match for Emily are:

Matt
Sadie
Tyson
Julie

I talked to our case manager today and confirmed the matches!

Although we don't bet on needed them, it does feel better to know exactly who is a match.

Yesterday my sister Kristin and her family came on their way to the lake and it was good to see them for a little while. Bella and Cora were so fun and we could tell they were excited to go to the lake.

Bella asked Emily's grandma if she was her great grandmother. Grandma Wheeler sweetly said, "Well I guess I am." Then Bella replied, " I thought all my great grandmothers were dead?"  Hahaha
We all got a good laugh out of that one.

Emily's schedule for the next few weeks goes something like this. Tomorrow she goes in for a bone marrow biopsy, MRI, and CT scan. Then we are good until Tuesday. Starting Tuesday she will get the lumbar puncture, rotuxin and vincristine chemo all on Tuesday and then Wednesday she will have another lumbar puncture. We will be in the hospital for about 7 days and then will have out patient appointments after that for a while. Then hopefully we get another break before we start the 4th cycle.

Emily is optimistic about it all but we agreed that she didn't have to enjoy it or like that she has to do it. We read a great quote that said, "don't think of what chemo does to you. Think of what it does for you." I bet we could apply that to our situation here as well. Don't think of what all of this is doing to us but think of what it is doing for us as a family. Our whole family on both sides. Even our friends should think this way.

I think I mentioned earlier that Emily and I found out that she is allergic to the whole penicillin family. We talked about that after she was feeling better and it just makes sense that there wasn't a better time for us to find out that she was allergic to penicillin. She was already in the hospital for another rotuxin challenge that went great. She got a fever that didn't come from anything. But that small moment of pain and itchiness will no doubt bless her in the future. And make her treatments go that much smoother.

Jack is doing great. We have almost coaxed a genuine smile out of him from daddy's raspberries on his bare stomach. Where did that tradition start anyway? He is sadly growing out of clothes faster than we want because in the time it takes us to dig through the piles of stuff we have to find something that will fit he has already grown out of them! Good think we have lots of clothes in the next few sizes up. In some brands he is already wearing 3-6 month clothing. 

Emily put on a hat show for myom tonight she can really pull anything off because she is just so naturally beautiful. All the nurses tell us how envious they are because she looks so stunning without any make-up.