Keeping in Touch with Emma

Emma's Blog!
Many of you are looking for and asking about the blog that Emma has started.

It is http://www.surgerystinks8.blogspot.com/. She has come up with the blog all by her very own self. What she writes is what she is thinking which is so cute and hilarious. I don't help her with grammer or punctuation. (My mother was an english teacher. I have no excuse.) I just get her set up on the computer and she writes it herself.





Enjoy!!

Breaking News (as in breaking my heart)

Today... Monday... always the day, the big dance, the show.

Emma and I showed up at Primary Children's this morning for her treatments. I was so excited because we were only there for Chemo, basically in and out in an hour. I could handle that, Emma could eat (no fasting for tests) and we were happy.

Dr. Phil (seriously, but not the real Dr. Phil) came in and checked on Emma. She said she was happy, but gassy (quite hilarious description) and hungry.

The doctor then turned to me and said, "Well, we probably need to talk." The blood instantly rushed to my face as this statement brought back terrible memories of two specific occasions. I mean when has, "Well, we probably need to talk," ever meant anything good?

The first of these occasions was when I was a sophomore in high school. I was dating a severly attractive boy (he could bench 175, that was a lot). His name was Brad (the coolest name eva') and we were H-O-T! Anyway, one evening he takes me on a drive and completely unbeknownst (yes, that is a word) to me, he was breaking up with me. I mean usually I could tell if we were drifting apart from as a couple, or I was the one doing the dumping, but no! He said, "I think we need to talk," and WHAM (not the singing group) it was over. Heartbroken.

The second occasion was just a couple of weeks ago. Dr. Graham called to let me know the results of Emma's blood draw. She had been sick. I was expecting something... but not that! Dr Graham said, "We need to talk, (this sentence is becoming a theme here... see?) You need to sit down." To which I responded, "I'm hanging up now." At which time WHAM (again, not the singing group, however I would like a reunion)... Leukemia.

As you can see this "talking" is not a good thing for me.

Anyway, Dr. Phil said that Emma has philadelphia chromosome translocation . Long story short (click on the link if you want some biology) two chromosomes (#9 and #22) have cross breeded, which is against the rules! This makes it harder to treat leukemia. These two cells had an affair (shame, shame) and as a result have caused lots of mutant DNA throughout her cells. In the end, Emma will need a bone marrow transplant. In the beginning (I act like it was so long ago) this is what were so thankful she didn't need.

Her siblings (all five of them, thank goodness for proliferation) have now been tested to see if they are a match (we will know the results in two weeks). They each have a 25% chance that they will match. No this does not mean that we have a 125% chance of matching. Come on, where were you during statistics? But, with so many siblings, the chances are obviously higher that a match will be found.

This is what we are praying for... that a match will be found within her siblings. Please, please, I am pleading with you (I have lost all pride) to join me in prayer as we ask our Heavenly Father to help us through this time.

Of course it is late at night. I can't sleep and everything seems darker than it really is. The light will come tomorrow. The christmas trees and the season give me hope. I will head over to Emily's house tomorrow because her house sparkles and it makes me happy. You all make me happy and you all give me hope.

Tears... amen.

-Lana

Monday, December 8, 2008

We left for Utah after church and had a nice visit with our friends Beverly and Keith. My neighbor, Diane, chauffered us down which was very comfortable.

Our treatment wasn't until 1:30 which makes it hard because Emma can't eat before and since she's on roids she thinks she's starving to death. They got her in at 11:00 which I so appreciated because then she could eat.

She was incredibly brave. Last week it took 45 minutes to access the port in which she gets chemo and they draw blood. This week it only took 10 minutes because she wasn't fighting it so much. It actually doesn't really hurt her, she just works herself up and thinks it's going to hurt.

The snow started about 8:00 am and never let up which means we're staying another night in Utah. We heard the roads to get home were nasty and to tell you the truth, Diane doesn't drive after dark.

We ended up spending over six hours at the hospital. Emma's red blood count was so low that she needed a blood transfusion. Transfusions take several hours so Emma painted and did crafts while Diane and I visited and made fun of celebs in the People Magazine. Can you say BOTOX?

Hopefully we'll get home tomorrow. Until then, Jeff will have the fort held down (hopefully)!

-LANA

Welcome Home

I am so happy to be home! Emma and I arrived home on Monday.

We actually left the hospital Friday afternoon and went to stay with my cousins in Draper. That night Emma had a bloody nose that lasted for 35 minutes (chemo patients aren't supposed to bleed for more than 10 minutes). I was so nervous we would have to go back to the hospital because the bleeding lasted so long, but as we loaded into the van, the blood stopped. Thank goodness!

We went in on Saturday for a blood draw, had Sunday off and then went in Monday morning for Chemo and more blood draws. Also she had another spinal tap and bone marrow aspirate. We haven't got the tests back from either of those, and I am quite anxious to hear if there is leukemia in the bone marrow. We're wishing no!

So we got home Monday night and it was so great to see the family again. Ty kept saying I missed you Emma and Carly kept staring at me and then cuddling and then staring again. The house was decorated with a huge Welcome Home banner from her school and lots of fun activities, treats and gifts awaited her arrival.

She's loving the activities because she's bored sitting at home and she loves the treats because she thinks she's starving to death (the meds make her hungry). She can eat!

For the most part Emma is optimistic and happy. Every once in awhile she'll cry because she knows she's going to lose her hair or she'll be disappointed that she's missing out on something at school or church.

Amazing people and amazing things have happened in the last couple of weeks. I can't believe the outpouring of service, love and prayers.

Thank you. Thank you. -Lana

With Grateful Heart

With grateful heart I write this post to say thank you for all of your love and support. We have had a heck-of-a-week and it hasn't even been a week.

I am grateful for my family. The love that I receive from them.
I am grateful for my friends and the extra support that they give in time of need.
I am grateful for medicine and the miracles it can perform.
I am grateful for Emma and the extended "date" that we've had these last couple of days.
Mostly... I am grateful for my Heavenly Father and Savior Jesus Christ. It is through the people listed above that He has blessed me. It is through the hands and spirits of His children that I am buoyed up and can continue forward.

My heart is full and my tear ducts are exhausted as I say thank you for everything.

-Lana

Mutiny in Primary Children Rm 4408

So apparently we are in the protesting phase. She's NOT happy. This morning she had to take 6 pills and she gritted her teeth and screamed.

At times like these I go back and forth between trying to be understanding and loving to wanting to ground her. She's old enough to understand and to realize it must be done, but then again, who wouldn't want to throw a fit.Today they had to change the dressing on her portacatheter (don't know if I'm saying it right) and I think that was painful for her. Bandage burns are the least of her worries, but they hurt.

No fevers for almost 24 hours which is a true blessing. They were so high and made her super uncomfortable and cranky.

The pee has gone back to it's original color which cuts down on the bathroom excitement, but we know she's clearing out the drug. Have I told you that her waste is a biohazard? If we come into contact with it, it must be rinsed off immediately. Which means I have to wear rubber gloves and make sure that Emma and I both stay clean. Crap, where's my HAZMAT suit? I swear I picked one up at DI.

Lots of well wishers and love. I feel it coming from every direction.

Many, many thanks.-Lana

Utah is Beautiful but I'd rather be in Idaho

Another day at Primary Childrens. Such nice people, super great doctors and nurses. Really wierd oncologists. What a perfect combination!

Emma had surgery yesterday (Sunday 23) and everything was successful. They did the spinal tap and found no bad cells, but put chemo in the spinal fluid to kill any just in case. The bone marrow draw was full of leukemia and looked very text book for what she has. They also put the catheter port in just below her left breast and it's plastic not metal. I was sad she wouldn't be setting off any metal detector alarms. They put her on narcotics which made her super strange and kind of funny, but also quite bossy and angry.

The port area is in a lot of pain today and she's had a headache, back ache and serious discomfort. Her left hand and both of her feet are super swollen. The hand looks like you took a rubber glove and blew it up like a balloon. It's really cute, but also sad. The swelling should go down soon. I think it's like having a baby. The day you deliver you don't feel as bad as the day after you deliver. I'm hoping tomorrow she's a bit better and stronger.

They gave her her first round of chemotherapy this evening. One has a name that starts with a V, one is a steroid, and the other is called donnarubison (I'm sure I spelled it wrong). I remember this one because I think it sounds like someone's name. Anyway, it's pink and they call it "little red." It makes her pee pink. Princess Pee I call it.

Jeff is catching a ride home tomorrow with Brek & Emily. I will miss him, but am happy he'll be with the boys. I think if I were them I would feel lonely... people talking about their family, knowing their sister has cancer, etc.

It doesn't sound like we'll be home until next Tuesday. Can I last another week?

Thanks for your prayers and encouragement. Pray that the chemo will work because if it does, she should have a full recovery! That's the hope and that's the plan.

-Lana

Ps. Remember how I was getting super buff and physically fit? Well I just climbed up to the fourth floor and I think just possibly I might pass out. Atrophy bites!!