Monday, July 26, 2010

. L . O . V . E .

Don’t just pretend to love others. Really love them. Hate what is wrong. Hold tightly to what is good.  Love each other with genuine affection, and take delight in honoring each other.  Romans 12:9-10

Hand stitching idea borrowed from A Pocket Full of Posies.

Wednesday, July 21, 2010


If we are having trouble, it is so that you will be comforted and renewed. If we are comforted, it is so that you will be comforted. Then you will be able to put up with the same suffering we have gone through. Our hope for you remains firm. We know that you suffer just as we do. In the same way, God comforts you just as he comforts us. 2 Cor. 1:6-7

This is Pastor Gary from Twin Lakes Church.  He is a 3 time cancer survivor and a very sweet man who made time in his day to visit Emilie.  During Pastor Gary's visit, he prayed, did a few magic tricks and shared his cancer journey with Emilie.  He shared with us that during his bouts of cancer and treatment, he smiled
E V E R Y D A Y!  He also shared a Bible verse that helped him....
"May God, the source of hope, fill you with joy and peace through your faith in him. Then you will overflow with hope by the power of the Holy Spirit. "  Romans 15:13

Thank you Pastor Gary for giving Emilie a chuckle and a great dose of encouragement and hope.
This is Theresa.  She is also a cancer survivor as well as a wonderfully kind, patient and confident young woman.  Theresa is also from our very small community of Scotts Valley and has been visiting Emilie on a regular basis.  She brings a craft to share with Emilie and for the last couple visits, she has also shared her crafty goodness with Nicolas (did I mention she was very patient?). She is such a sweet girl and her visits are really really good for Emilie.  Thank you Theresa for not wasting your journey, but rather sharing it with Emilie.
These are some of the many luminaries that lined the SV High track for the SV Relay for Life.  Not pictured are two very brave Scotts Valley cancer survivors.  Ashton is a five year old who was diagnosed with Medulloblastoma in 2008 and is now doing great.  He had another MRI today and the preliminary results came back negative.  We were lucky enough to have a visit from Ashton and his parents today.  Ashton is a super cute little guy full of joy.  Thank you Ashton for bringing a big smile to Emilie's face today!

Evan is another Scotts Valley cancer survivor.  Evan is a ten year old who was diagnosed with leukemia (ALL) in 2008 and is doing just wonderfully now.  Evan and his family visited during one of their visits to LPCH.  Thank you Foy Family for sharing your journey and giving us great hope!
Are there not some in your circle to whom you naturally betake yourself in times of trial and sorrow? They always seem to speak the right word, to give the very counsel you are longing for; you do not realize, however, the cost which they had to pay ere they became so skillful in binding up the gaping wounds and drying tears. But if you were to investigate their past history you would find that they have suffered more than most. They have watched the slow untwisting of some silver cord on which the lamp of life hung. They have seen the golden bowl of joy dashed to their feet, and its contents spilt. They have stood by ebbing tides, and drooping gourds, and noon sunsets; but all this has been necessary to make them the nurses, the physicians, the priests of men. The boxes that come from foreign climes are clumsy enough; but they contain spices which scent the air with the fragrance of the Orient. So suffering is rough and hard to bear; but it hides beneath it discipline, education, possibilities, which not only leave us nobler, but perfect us to help others. Do not fret, or set your teeth, or wait doggedly for the suffering to pass; but get out of it all you can, both for yourself and for your service to your generation, according to the will of God.  Taken from Crosswalk the same day that I composed this post.  Amazing!

Saturday, July 17, 2010

My "Budding" Photographer

Emilie took these shots last month when her legs first decided not to cooperate.  She took all these photos while in her wheelchair.  I let her use my camera, set the settings, picked my fav AF point and let Emilie go to town.  She did an awesome job for her first time using a DSLR.  All shots are SOOC. 

Friday, July 16, 2010

Supergirl and the Visitor

A couple days ago, Emilie had a special visitor.....our dog, Sandy. Emilie was so happy to see Sandy that she cried happy tears and Sandy was so happy to see Emilie that she jumped up on her lap. Very, very sweet. Thank you Eric for bringing Sandy to the hospital; you made Emilie's day!

Emilie started her second round of chemo today. The doctors are thinking that her leg paralysis is due to one of the chemo drugs that they gave her in her spine (intrathecal) during the last induction. She did not receive the intrathecal this phase, but is receiving the drug via IV at a lower dose. It is pretty scary, but she is being closely monitored by the neurologists as well as her oncology team. We have requested that the chemo be administered during the day when we are awake so that we can watch over her as well as having more medical activity on the floor. Please pray that the chemo treatments zap the leukemia and that Emilie does not react neurologically to the chemo.

Tuesday, July 13, 2010

Frosting and Supergirl

The final histocompatibility report is back. "Frosting" is a PERFECT match for "Supergirl", that is in phenotypes/genotypes.   Hopefully, Emilie will not need a bone marrow transplant, but if she does, Nicolas is her man!

Monday, July 12, 2010

Never, Ever Give Up!

We are like clay jars in which this treasure is stored. The real power comes from God and not from us. We often suffer, but we are never crushed. Even when we don't know what to do, we never give up. In times of trouble, God is with us, and when we are knocked down, we get up again.   2 Corinthians 4:7-9

Emilie had a great weekend and a great Sunday filled with super nurses, visitors, a magic lesson, a chocolate fountain (provided by Sunshine Kids), lots of walking around campus, wheelchair races with my three boys and a new way to do family dinners.  Paul arrived home from Camp Okizu Sunday and Emilie was so excited to see him.  He brought her many "friendship bracelets" that he made at camp and the kids even had some quiet time alone to chat.  We had our first ever LPCH Crazy Train family dinner with take out "Buca" at the cafeteria courtyard.  Emilie had seconds followed by a Drumstick!  Fun, fun time. 

Medically speaking...Emilie is currently undergoing her 5th plasmapheresis treatment today.  She has not shown any sign of movement in her legs, but the renal doctor came in and said that it may take awhile.  It is not looking like a typical Guillain Barre Syndrome, but may be due to a chemo toxicity.  The neurology and oncology teams are really getting a workout.  We are praying and also ask for prayer for MD wisdom in treating Emilie, leg movement restoration and elimination of leukemia. 
(Photog Eric did a fine job, even capturing Nicolas trying to touch the mole under my chin.  Weird kid!)

Wednesday, July 7, 2010

Plasmapheresis and Mr. Toad???

Just a quick update on Emilie and her legs.  After an additional MRI, the neurology and oncology teams have found some inflammation on Emilie's spinal nerves.  She will be undergoing plasmapheresis which is a filtering of her blood to get rid of her antibodies that are attacking her nerves.  She will have her first treatment this afternoon in the pediatric intensive care unit (which she is not happy about because it is too noisy) and the following four treatments in her room (which may not be our room tomorrow).  She will also be getting another lumbar puncture and a new line in her neck so that the plasmapheresis can be run at a fast rate.  We are hopeful that this will restore her legs to "soccer status" and are glad that her bone marrow test came back "good" so that chemo can be pushed out a few days.
So that is where we are on Mr. Toad's Wild Ride!
(The canine is an employee of LPCH and her name is Carly.  She is the sweetest dog ever and she knows exactly when Emilie needs a soft ear to rub!)

Monday, July 5, 2010

* 5 * Peeps * 12 * Times*

This is a project that I wanted to start long ago and being the very anal being that I am, I was going to start January 2011 seeing that I missed January 2010.  Kind of like starting a diet on Monday...pure kookiness!  So, thank you Tara Whitney for the inspiration to start "whenever".
Here is our "* 5 * Peeps * 12 * Times *" project for July 2010 and our new family motto: GET BUSY LIVING!

Thursday, July 1, 2010

DNA, Bone Marrow and Frosting

In 2003, when I first found out that I was pregnant with #3, I was in total shock!  Two kids seemed just right and really, how in the world could a 40 year old be pregnant? (No need to answer, I finally figured it out.)  I accepted reality and trusted that God had a great plan in place.  I quickly fell madly in love with "Baby E".  After Nicolas' birth, we realized that our family of 5 was perfect!  We refer to Nicolas as "the frosting on our cake".  This morning, I received a patient family report for bone marrow transplant which, after blood draws, shows which family member would be the best bone marrow donor.  They gather this information early on in the event a bone marrow transplant is needed.  I've believed that God has a special plan for my kids.  Presently, it is looking like God has a great purpose for Nicolas as Nicolas' bone marrow would be the best match for Emilie.  When things seem crazy and out of control, God is always in control and has a purpose and plan for everything.  I'm blown away by how much God loves us and cares for us!

Before I formed you in the womb I knew you, before you were born I set you apart.   Jeremiah 1:5

Before an architect constructs a building, he meticulously puts every detail on paper, every component needed to make his dream into a reality. The idea is first conceived in his mind, then is transferred on paper, and then when everything is just perfect, he starts the process of building his creation. In my own limited understanding of God's creation process, this is how I imagine it to be. He first conceived us in His mind, and with great thoughts of love, He began to chart every detail of our DNA in preparation for the time when he would form us in our mother's womb. What a wonderful thought, to know that the God of the universe knew us intimately and set us apart for His purposes even before we were conceived!