The beginning of Eric's hospital stay {BMT Day's -5 -- -3}

Thank you all for your patience in waiting for me to post how E is doing so far. I have been busy (as I will be for quite some time) dividing my time between my babes.

Friday, July 26, 2013

We got up around 7 am to get ready. We seem to be last minute packers for going places. My mom and crew came over to take care of Tayvia and clean our house for me. We arrived at the hospital at 10 am.

First off Eric had to get a new chest x-ray. Even though he had a chest x-ray not long ago I guess they expire, so before getting chemo today he needed a new one. And guess what?! It looked even better than the last one >> his tumors are still shrinking! Yay!

The top picture is in the conference room and the bottom picture is of Eric with the banner for his first week.

We finally made it upstairs for Eric to get blood work done, vitals taken, and his lines cleaned out. Next we met with one of the doctors (Dr. Brigitta Mitchell) to discuss the plan and sign consent to receive chemo treatments.

This is what Eric's schedule will look like for the first 5 days. 

*Days -5 -- -3 are chemo days. (they count down to the transplant)
*Then he will have a couple days off to let the chemo escape his body. Once there isn't a trace they give him his cells back.

*Day 0 he gets his stem cells back. He will get about 4 bags that contain just over 8 million stem cells. To keep the cells together during freezing and thawing they put some agent in it. When Eric is given his cells back and they are going throughout his blood this agent will basically evaporate out of him. The agent gives off a not so pleasant odor.

On Friday afternoon when I was leaving I could smell "creamed corn" and heard someone say that someone must have received their stem cells. So visitors aren't recommended Wednesday or Thursday because it can give you a headache. You have been warned.

**It takes about 10 days before Eric's white blood cell count will start to go back up. Eric's immune system will not be strong so please be mindful about visiting during this time.

After the plan and consents were in place our coordinator Greta showed us to Eric's room. I'm a little surprised that, for how long people have to stay in the hospital for a transplant, their rooms aren't bigger. He at least has a great view out his window!

The view from his window has the University of Utah. 

We got a couple cokes, ordered lunch and I went back down to get the first load of our bags. I enjoyed organizing the room and decorating it!

My sister in law Marrie cut these vinyl words out with her cricut and I put them up around his room.

Top Left: His bike. It folds down when in use! Bottom left: The front right of his room. One of the recliners, TV and wall art. Top right: Eric's bed and to the right is the bathroom door. Middle right: The room door is to the left, and I brought a hamper that is hanging on his closet. Bottom right: a sweet glow in the dark basketball hoop that is brother Paul gave him.

We tried to rest some and watch a little tennis but Eric's nurse's came in to give us orientation to the hospital for his visit. They started Eric on some fluids and anti-nausea medicine before starting chemo. By this time (4:30 pm) I headed out to my mom's to see my girl and eat dinner. When it was time for Tayvia's bath we did Facetime with Eric. We started Facetiming before the bath and she was so cute. Tayvia took the iPad and was carrying it around saying, Da Da Da Da. She was excited to see him! Then he got to watch her play in the bath. She would splash and Eric would sign 'more' so she would do it some more. It was cute! After I got her ready for bed I left her to my mom to put her down and I headed back up to the hospital to stay the night with Eric.

Saturday, July 27, 2013
The recliner in Eric's room is not comfortable. I woke up around 5 with a migraine and snuck into bed with Eric. He rubbed my head and I fell back asleep. I ended up going home a little earlier than planned because I didn't have headache medicine with me. Later I threw a bridal shower for our future sister in law Jodi. It was a lot of fun. While the girls were having a party Paul went up to see Eric and kept him company. After the shower I headed to my moms to see baby girl again, eat dinner, and visit with family. Eric's parents went up to see him and had a nice visit. Eric received his second day of high intensity chemo. Tayvia and I were able to Facetime with Eric again before bedtime. Unfortunately she woke up with a runny nose so no visit's to dad for a while :( This mama is sad that she can't give that cute face any kisses but I don't want to get sick or pass it along so I''m washing my hands like crazy and trying not to touch my face. I slept over again with Eric and hanging out with him most of the day.

It's the simple things in life! This has to be one of my favorite pictures!

Other randomness...
*We have gone on a couple walks together. Eric has to wear a gown thing, a mask, and gloves every time. I'll try to get a picture of him soon. He seems a little sick of pictures at the moment but I'll get one within the next week. Eric also has a bike in his room and some weights to exercise on to help keep him active. We may do a few yoga sessions with our sister in law Rachel.
*He seems to be tolerating chemo well. Nothing to complain about other than being tootie frootie. (maybe that's more my complaint lol)
*They calculate all that he eats and drinks as well as everything that goes out. In our conference Friday morning the doctor said that Eric needs to eat well, stay active, and to do well and get our of the hospital in good time.
*Eric has to take 8 pills a day. Lets see if I can tell you what they are...anti-fungal, antibiotic, anti-viral, multivitamin, B vitamin, Kepra...let me think about what the other two are. He also gets a shot to prevent blood clots.
*Eric is staying entertained by the iPad, computer, and he is borrowing his brother Russ' small T.V. and he brought up his PS3 to play on it. He also has books, etch-a-sketch, and card games.
*Visitors are welcome as long as they aren't sick. If you do visit you have to wash your hands out side of his room before entering his room! If you have been exposed to someone who is sick it's not recommended you visit. Children also aren't recommended. Thank you for your cooperation. If you ever want to Facetime with him we use my gmail address. If you need it let me know. Also, flowers cannot be sent to Eric but notes of love and support are awesome!

Today is such a special day!

It's my incredible mans 29th birthday today!

.Getting the Party Started

*Slightly graphic pictures and detail. If you don't want to continue just know that Eric was pretty sore from getting the port out and new line placed. And he was a rock star and collected enough stem cells for both transplants in one day! That's my man!

On Monday I went with Eric to LDSH (LDS Hospital) to get his neupogen shot. He also got some blood work done. Then we were off to get his port removed and get his new central venous line with three lumas (I thought its called a trifex but I'm not sure) placed.

Below is what the Port looked like and what his new lines look like. Having separate lines will allow them to use each separate for different purposes (draw blood through one, give chemo through another etc). 

It took them about an hour and a half to do both procedures. After getting a set of vitals the nurse accessed Eric's port (last time!) to place an I.V. where they would administer fluids and give him 'happy' medicine. They placed the central line first, next they removed the I.V. and then removed the port. To remove it they make an incision above the port, open him up and just pull it out. simple as that. They asked him if he wanted to keep the port as a souvenir/trophy but he kindly declined. :) 

We had to wait about an hour after he came back to recovery to make sure it didn't bleed too much. (although a little is normal and expected) 

Side note: I FROZE to death! The nurse was nice enough to give me a warm blanket (heaven) (and a coke, also heaven!) but the heat wore off and I curled up in a ball and froze. Going to wear pants or bring a jacket from now on. Sorry, I know this blog isn't about me but this hospital is really cold!

Feelin like 'half a million bucks!'

That night Eric's brother Paul took Eric back up to LDS to get a shot of Mozobil which helps the stem cells release and be collected. They have it down to a science and giving this medicine and neupogen just so many hours apart gets better results.

The next morning was stem cell collecting day 1. First Eric had blood work done again. They are watching closely what Eric's white blood cell count is because that helps tell them know how well/fast he will collect. His numbers went from 85 to 135 to 255! The nurse was giving him air high-fives as he passed by the room! Anything over 100 is awesome! Therefore he didn't need another shot of neupogen. Woot! Woot! Next they got Eric all ready and hooked him up to the 'machine' that would do its thang to separate the stem cells. It also separated platelets because when they give him back the stem cells in a few weeks it needs to be a good mixture of what makes up blood. So above the machine, although this picture doesn't really show it too well, there is a bag with yellow stuff (platelets) and a red bag (a few red blood cells but mostly white blood cells) The machine is really loud and sounds old! Eric said it looks like its from Star Trek.

Eric kept entertained with by resting, using the iPad, and we played a couple rounds of a card game called "golf." He actually beat me at that game.

We were at the hospital from 7am- 1pm which is about the same as the day before. During collection today we also were given some education on the transplant process. Some of it was repeat which is good. I did have a few more questions to ask that have come up since our initial appointment.  I wanted my mom to come along with us today to help soak in information and ask questions regarding Eric's diet change. (which is another post for another day because I know that you are all so curious...)

That night Eric got the phone call that he didn't need to go back up to get a shot of Mozobil because he collected 16.2 million stem cells. We were told that their goal was to collect 10 million which was being greedy, and that Eric could get away with only collecting 8 million. He basically doubled what he needed to get. Bam! We were also told that it usually takes anywhere from 1-5 times to collect them all. They were impressed that it only took 1! Champ!

Getting started

Eric started on Friday getting neupogen to help build up his white blood cells and stem cell production. It's a pretty quick thing in the arm. I took Tayvia with us the second time just to introduce her to where her daddy is going now. I know she is just little but she still worries about her daddy! He is the fun parent after all. Eric hasn't experienced too many side affects yet. A little bone ache after the first time but not much since.

Saturday night we went with the Holman's to the Nephi Ute Stamped Rodeo! Getting our inner country side on!

Patriotic festivities and consent to proceed

Today Eric and I went to the BMT clinic up at LDS hospital for his appointment to sign consent forms to do the stem cell rescue. First they took his vitals and drew some blood. Have I mentioned before that now that Eric has been done with chemo he prefers his blood drawn from his arm? I assume because its faster?!

Tayvia at the Murray parade.

Next we waited for a bit until the doctor we were meeting with and Greta (our coordinator) were ready to meet with us. We met with Dr. Julie Asch and she went over the schedule that we have for the next two weeks in detail. What medicines he will be given, how long things take etc She was very nice and helpful! 

Family 4th of July photo.

Looks like Friday morning Eric will start to get a shot in the morning everyday until Monday to build up his stem cells. So no staying overnight at the cabin after the rodeo like he hoped this Saturday.

Cousin Ellie and Tayvia playing in her little pool out back. Tayvia lasted long enough in there for this picture then was off to play in the mud....her fav. thing to do these days.

A spiritual thought.

This past week I had a friend text me about a lady who is a convert near where they live in North Carolina. My friends husband went to her house with the missionaries to visit with her. This lady is having a hard time with "why God let's bad things happen to good people" and my friend said that our cute little family is the perfect example of this. "You guys have the best attitude and are inspiring so many people. I wanted to tell her about that and wondered if I knew of any good talks she could share with her?"

I emailed this reply.

Thank you for giving me the opportunity to sit down and reflect on this question. There are so many things that I could say. Funny enough I have not once been swallowed up in self pity since Eric got sick. I haven't gotten angry at God. I haven't questioned His divine love for us. He knows us better than we know our selves. Therefore we can do all things through Him.
Now that does not mean that some days aren't really hard. That does not mean that some days it doesn't seem fair that Eric is fighting for his life.
Looking on the positive side of things, remembering the 'big picture' or the plan of salvation, being willing to grow through this trial, and trusting in the Lord through all things are the ways that I'm able to get through this. I know that I'm not perfect but by trying my best I will be blessed through this. It hasn't hurt to have an amazing husband who has been so strong through this!

Walking to church.

Eric's sister sent me a great article last week:

I read an article in the July Ensign today that I thought was very good.  It is "A Time for Faith Not Fear" by Larry W. Gibbons.  I recommend reading the whole thing, but it's not online yet so here are a few snippets.

Most of us naturally long for security and clarity in life, but there must be some uncertainty to allow us to use our agency and grow.  There is no freedom without agency, and there is no true agency without some risk.  Therefore, there is no true freedom without some risk, some uncertainty.

"Lift up thine eyes" (Isaiah 60:4)

When your difficulties seem overwhelming, look up, not down.  When sadness and despair start to get a foothold, remember this;  the Atonement of Jesus Christ did more than overcome physical and spiritual death.  Yes, we will all be resurrected, and all of us have the opportunity to be forgiven of our sins as we repent and exercise faith in Jesus Christ.  But as wonderful as the gifts of resurrection and repentance are, the Atonement is much more.  Through the Atonement we can receive strength to meet the most difficult trials of life.

When we look up to the Savior, we can be strengthened beyond our own abilities and beyond what we can envision with our mortal understanding.  The Psalmist said it this way:

"I will lift up mine eyes unto the hills, from whence cometh my help.

"My help cometh from the Lord, which made heaven and earth" (Psalm 121:1-2).

When the days seem dark and foreboding, "lift up thine eyes".
....

"You are not alone"

I have found that usually when we face our most difficult tests, the Lord is there ahead of us to prepare the way through them.

My wife and I were a bit anxious about going to Russia when called to serve there in 2006.  We had never been to Russia and did not know a lot about it.  The responsibilities of the call seemed challenging, to say the least.  In a meeting in his office, President Packer gave us wonderful counsel:  "Remember, the Lord will have been there before you."  He then reminded us of the Lord's promise, "For I will go before your face.  I will be on your right hand and on your left, and my Spirit shall be in your ears, and mine angels round about you, to bear you up"(D&C 84:88).

Speaking of angels, I treasure the words of Elder Jeffrey R. Holland of the Quorum of the Twelve Apostles:  "I testify of angels, both the heavenly and the mortal kind.  In doing so I am testifying that God never leaves us alone, never leaves us unaided in the challenges that we face.  'Nor will he, so long as time shall last, or the earth shall stand, or there shall be one man [or woman or child] upon the face thereof to be saved.' [Moroni 7:36].

And then this happened lol

Natar (Blood draw) and exam

Only a week more of doing any kind of yard work and then it's vacation time for Eric.

Watering the Garden. I know besides tomato's and squash it looks like weeds but the carrots & onions are doing pretty good.

Our little helper. She gets so dirty these days with her love for rocks and dirt. Here she was trying to pick up that rock.

Trimming the vines.

I know you didn't come to read about us doing yard work so I will get on with it ;) We met with a mid level yesterday because Dr. C had just returned back from vacation. Eric's blood pressure was 99/64, temp 97.6, and weighted in at a pretty good weight. Kristen went over some of Eric's recent tests. MRI of his brain looks okay. There is some confusion about it. The measurements are a little different but they said that their is no progression. So maybe it has changed shape but isn't growing?  The CT scan looked good. Nothing new and everything measures smaller. My question about why Eric was having two more rounds of chemo before getting the BMT was answered. It kept the cancer at bay until everything was ready for the BMT. Eric's HCG level was 27 last week! The lowest it's been! They were going to check it again today. Kristen also said that Eric's echo and pulmonary function test came back fine. The chest x-ray did show some small nodules still. We wont be going back to the Utah Cancer Specialists for a while until Eric is all said and done with the BMT.

We went to the park this last week and Tayvia LOVED going down the slides!

Family Pictures!

I know that I'm late in posting these but here they are! My beautiful family.

Tests

 Eric had tests on Tuesday. I could kick my butt! Worst moment for me yet.....because I decided not to go. When I looked at his schedule it was going to be a long morning and I didn't want to just be in the way while they poked and prodded Eric. Eric isn't the type to tell you to do anything either so I kissed him off and said to call me when he had a break. Terrible decision!! I'll tell you why in a minute.

Family Love

His morning went as follows:

9 am Cardiology appointment- Echo/EKG

10 am Imaging appointment- x-ray of his chest

11 am Pulmonary function test

11:45 am BMT clinic, labs, update history and physical, BM BIOPSY.

My loves

How did I miss BONE MARROW BIOPSY. I feel so bad that I wasn't there to support him. After he left I think Tayvia could sense that her dad had gone to the doctors because she was very clingy and fussy. I was a mad-women trying to clean my kitchen because it hadn't been done in at least two+ weeks and I thought that if I just get that done I will be happy. It actually just stressed me out because it took me forever and I had a little girl hanging on me. So finally when I was done she calmed down as I started to play with her instead of trying to distract her with toys. By this time she was ready for a nap. After I put Tayvia down I decided to go get a manicure & pedicure because my cousin could stay at my house with her (or she could have watched her all morning while I went with Eric. So dumb!) I needed to get my nails done badly and it would help me mellow out. So all the while I was treating myself, Eric was being numbed, poked and had 30 seconds of intense throbbing while they took out bone marrow from the back of his hip. The nurses kept asking him if he had any support at home. They wondered why no one was there to be with him. "Are you really driving yourself home?"

Eric still has the moves.

When he told me this I wanted to shout YES! I'M HERE FOR HIM! So from now on I think that I just need to go to EVERYTHING! I don't want to regret not going with him again. I've tried to take him to most of his appointments and tests or have his family help too. (they were in Lake Powell still)

Family picture.

July 10th we have an appointment for consent and July 12th-14th Eric will get shots to help build up Eric's stem cells, July 15th he will have his port removed and new lines placed, and July 16th-19th collect stem cells. Depending on how long it takes to collect enough stems cells it will be the following week that Eric will be admitted to the hospital for the high intense chemo and transplant.

Eric doin his thang!

From the few pages for his hospital room banner that I have seen people do I'm pretty excited! His room is going to look sweet! I hope more of you are working on yours! Send me your email if you want more details/instructions on what to do!

A little poem

Do you remember last December when I posted a poem that my beautifully talented sister in law Marrie wrote? Well here is another masterpiece.

 Justine 
I see you there
Steady as a rock. 
Feelings hidden,
Emotions locked. 
You are my pillar
My hand to grip tight. 
Looking upward
My shining light.
You can let me in.
Show me what's inside
Don't be afraid. 
No need to hide. 
Let me see you're scared.
I am not alone.
Feelings we share.
Our hearts have grown.
In this together. 
Continue the fight.
Always brave.
But, Holding me tight. 
Love, Eric