Saturday, February 25, 2012

A Calm Among The Chaos

Last night we had a bit of chaos in room 1415.   Emilie has had intermittent fevers for the last five days and antibiotic after antibiotic has not gotten rid of the fevers, so last night they started a new, strong anti-fungal med in hopes of stopping the fevers.  Well, 15 minutes into the dose, Emilie started having an allergic reaction complete with difficulty breathing and coughing.  This led to her heart rate increasing, blood pressure dropping, oxygen saturation dropping and of course lots of nurses and docs in the room.   Prior to the new med, she was given "pre-meds" (Benadryl and Tylenol) to prevent an allergic reaction.  So, on top of all her numbers dropping, she was doped up on Benadryl, which made things a little bit scarier.  About an hour after treating her reaction, she was pretty much back to normal, but her little body was exhausted so she took a good nap.  Thankfully, Eric (who had not been at the hospital for 5 days), showed up 10 minutes into the reaction.  It was nice having him here!!!

Every morning, Emilie's docs make daily rounds and today, they had super news.  Emilie's white blood cell (WBC) count went from 300 to 600 which gave her an absolute neutrophil count (ANC) of 400.  When Emilie has three days of an ANC of 500+, Nicolas' bone marrow is officially engrafted.  Woohoo!!!! The docs think that her WBC may double again...we're hoping for a WBC of 1200 tomorrow.  An increase of WBC also means that her immune system is recovering and will slowly be able to keep "bad guys" away. (Click HERE for more info on BMT. )  Really, really great news.  Every day has it's blessings and challenges, but we know that....
  
God is our refuge and strength, a very present help in trouble.
Psalm 46:1
and
Be still and know that I am God. 
Psalm 46:10

Photobucket

Monday, February 20, 2012

19


Nineteen years ago today I became Mrs. Erickson.  Today, I am amazed at how differently our lives have turned out.  Back in 1993, not only did I have big shoulder pads, I had my own plans.  Plans for "my" life, not necessarily "our" life.  I spent every dollar I earned on some sort of flying lesson.  After college I got my private pilots license.  Working in the aerospace industry pushed me further into loving all things aviation related.  I soon got my instrument rating and started working on my commercial rating with hopes of flying banner planes along the LA coast.  My big dream was to fly commercial jets, with really no concern to what my new husband thought.  Well, God had a different idea.  In 1995, I moved back home to work with my ailing dad and help him run his company; Eric followed shortly thereafter.  A couple years later Eric and I were blessed with Paul and a brand new house.  In the same year, my dad died leaving my mom and I to run the company "solo".  A few years later, we were blessed with Emilie and then of course, "Frosting" came along.  All the while I was a "stay at home, jean wearing, self employed, sometimes barefoot and pregnant mom and wife" with a great life, but so very different than "my" plans.  In reality, my plans would have taken me on many wild adventures, but most likely I would have ended up a divorced adrenaline junky living in Marriot Hotels across the country.  So, here I am today, sitting in a hospital room, celebrating our 19th anniversary with Eric via text messages and watching Emilie's vital signs while she sleeps.  I'm certainly not thankful for a sick child, but I am thankful that God redirected my path.  I'm thankful that I have 3 wonderful kids and that I have a husband who has stuck around for better, for worse, for rich, for poorer, in sickness or in health.
Happy Anniversary Eric!!
Photobucket

Friday, February 17, 2012

Reality Ahead...You've Been Warned!



Up until a couple days ago, things were going fairly well for Emilie.  She tolerated the radiation and chemo treatments well and her appetite still existed.  The monster named mucositis arrived and has been causing havoc since.  Mucositis is the painful inflammation and ulceration of the mucous membranes that line the digestive tract, starting at the mouth all the way to the "bum".  It's an adverse effect of radiation and chemo.  Ugh! It is so painful for Emilie that she is not eating, drinking or talking.  She is now taking nutrition via IV as well as all her meds.  The pain is controlled with morphine, that was "as needed" yesterday and changed to "round the clock" today.  Emilie is super tough and tried to work through the pain, but it was just too much.  She is very upset about being "fed" via IV and asked to have the nutrition bags covered with a pillow case.  It's probably not a good idea to send Emilie pictures of yummy food at this point.  Mucositis is normal and expected to last another 1-2 weeks.  We are taking each day as it comes.  Other than the mucositis, today was a good day as far as Emilie's lab numbers.

Nicolas' cells are setting up the bone marrow factory and we will be seeing results of Emilie's cell recovery in about 2-3 weeks.  Because she has had so much previous chemo, count recovery may take a bit longer, but because Nicolas was a perfect match, it may take less time for count recovery.

Emilie has endured so much pain, disappointment and sadness; things that no child should ever have to deal with.  Cancer affects the whole family.  The boys and Nana miss Emilie; Emilie misses the boys and Nana.  The boys and Nana miss me; I miss them.  We all just miss "normal", but we all have choices too!  I am choosing joy and gratitude.  Even with yuckiness all around us, there is always something to be joyful and grateful about.  We're keeping our hands up on our roller coaster.
Photobucket

Wednesday, February 15, 2012

A Hero In The Shape Of A Brother

 

Yesterday was the long awaited "bone marrow transplant day".  It was a big event in our family as well as in the oncology unit at LPCH.  Emilie went through two weeks of chemo in November and December to get her bone marrow to show zero cancer.  Last Monday, she got a new central line (third time is a charm) followed by radiation orientation.  Tuesday through Friday of last week Emilie endured 3 radiation treatments per day.  She needed to stand for 7 minutes during each treatment and with the help of her straight leg braces, she did wonderfully.  All the months of physical therapy and swimming really paid off; Emilie had great balance and endurance.  She is one tough kid! Last Saturday, she had a very high dose chemo which required her to also have a high volume of IV fluids.  The three of us worked very well to manage the 5 liters of "output" in a short 24 hour period!!!  Sunday and Monday were days of rest and Emilie really needed to rest as the radiation and chemo on her little body knocked her out.

Yesterday Nicolas arrived early for the harvest of his bone marrow.  He handled everything like a little man with no crying and lots and lots of smiles.  He thought it was pretty fun to order food off the hospital menu, play with the height of his bed and ring the nurse when his IV pump alarmed.  Nicolas ordered salmon and mashed potatoes for lunch and when I let Eric and Emilie know his lunch order, Emilie said that he would surely send it back to the kitchen.  When it arrived, Nicolas removed the lid and said, "OOOH, that looks good" and proceeded to eat everything on his plate.  He and I joined Eric and Emilie in Emilie's room to celebrate Emilie's new bone marrow before Nana took Nicolas home.  The (really bad) photo above shows Supergirl, Frosting and the bag of "hope". The hope which is our strong and confident expectation that this bone marrow transplant will keep Emilie in remission for ever. 

We will be staying in the hospital for about 4 weeks after which we will move to the Palo Alto Ronald McDonald House.  We will hopefully be home on May 25th just in time for summer.  We have experienced long hospital stays and lengthy time away from home and we are determined to get through 100 days and put this part of our journey behind us.

I have had many feelings over the last few months and I keep coming back to gratitude.  I am so grateful for yet another shot at life for Emilie and grateful to God for blessing us with Nicolas.  God knew!

Here's the story of Supergirl and Frosting from 2010.
Photobucket