Our Golden Girl

Happy 14th birthday Miss Emilie on this 14th day of the year 2014!!  It doesn't get more golden than that!  You are a joy and such an example of true bravery and courage!!  We love you so very much and are so grateful that you are our Golden Girl!

Thirteen

God is good...all the time!!  He has given us yet another miracle...another year to celebrate Emilie!!  Happy Birthday sweet teenage girl!!!  We love you so very much and are honored to be your parents.  Thank you for showing us what grace, kindness, compassion and love look like.  You are truly a miracle!!!!

365 Days

Today is day 365!!!  365 days ago, Emilie received a very large gift of bone marrow from Nicolas (story here).  We are so thrilled that Emilie has been doing well for the last year.  Her lab results are normal and her monthly clinic visits are now every two months.  She is working really hard at physical therapy and she is getting some return in her right leg.  She is able to walk with her "short" right leg brace and her "long" left leg brace....eliminating rehab equipment is a super good thing!!!  We are so grateful to God for Emilie's health and for the love and support from our family and friends.  Day 365 is a good day indeed!

Twelve

Happy happy birthday to you Miss Emilie!  You are one brave, kind, beautiful, strong, courageous, joyful, generous, loving, thoughtful, and funny twelve-year girl.  We love you so very much!  Thank you for being the wonderful "you" that you are!!

"Eees A Luuuv Day"

I met a man in the community kitchen yesterday and we started talking.  I was really not in the mood to talk as I was just "done", but God nudged me to pop out of my shell and at least say "hello".  The "hello" was followed by asking how his child was doing and he told me that his 3-year-old daughter just had her transplant yesterday.  I learned that he also had a "frosting", his 2-year-old daughter who was the perfect match for his older daughter.  Sweet!!  He then asked about our story.  I told him everything, with the exception of the exact day of the transplant because really, not many men are interested in specific details (Hi Eric!).  So, the first thing he asked was "what was the transplant date".  I told him the 14th...he thought, got a bit teary, and then replied "Eees a luuuv day!".   You are right, fellow transplant parent, it was a love day!!!  Thank you, God for taking me out of my isolation zone and blessing me with another "frosting" story of hope!

It seems time really flies here in the hospital which is one of God's blessings!  Much has happened since our last update.  Emilie is doing very well.  The official opening of her new bone marrow factory, or engraftment, was on March 1.  Her platelets are also rising on their own, which is a very good thing.  The doctors are very happy with her progress.  One of our attending docs has told Emilie a couple times that she must tell Nicolas that "he has really great bone marrow". Ha!  Because of engrafting, Emilie is off of antibiotics and because the mucositis has cleared up, she is able to take most of her meds by mouth.  More good things!  Emilie is also recovering from extremely large blisters on her feet.  The radiation/chemo combo did a number and caused baseball size blisters on both feet.  Thankfully, they are healing well.  Her mouth, throat, and foot pain has subsided, so they took her off morphine and are now weaning her off another pain med.  Today, the docs said that if she can take more fluids by mouth and eat a bit, they will send us off to live with Ronald McDonald.  More goodness!  The Emilie we know and love is back as of three days ago...awake during the day, chatty, smiling, doing crafts, doing school with her teacher from LPCH, etc.  Cancer treatment is really a crazy ride, so it's nice when we see some normalcy return.

Let us give thanks to the God and Father of our Lord Jesus Christ, the merciful Father, the God from whom ALL help comes! He helps us in ALL our troubles, so that we are able to help others who have all kinds of troubles, using the same help that we ourselves have received from God.  2 Corinthians 1:3-4

Because I have a hard time posting without a photo....my three "frostings"!!

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 in 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 its 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

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 (the 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 of 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 forever. 

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.

He Knows

Per our normal operating procedures, I go home on weekends and Eric stays with Emilie at the hospital. I cannot stay away, so I will go home to sleep and see the boys and Nana and then return to spend the day with Eric and Emilie at the hospital.  Saturday was no different...sleeping in, hanging out with the boys, and doing some errands.  I got a call from Eric that Emilie barfed (correct medical terminology) on her PJs and blanket during the night and would I bring a plastic bag to carry the yucky laundry home in.  Whenever we are inpatient, I bring a pillow case and a blanket from home to make things a little "homier" for Emilie.  The next call I got was from my mom telling me that a package had arrived at home for Emilie and if I was still in town to come by and pick it up before heading to the hospital.  Back home I went to get the package for Emilie and then off to the hospital.  At the hospital, Emilie was thrilled to receive a package and immediately opened it to find...

the most beautiful, encouraging, uplifting quilt made by our friend Mitzie!!!  See, God knows what we need and when we need it.  Not only did we need a clean, happy blankie, but we also needed a good dose of God's love that was shown through this wonderful gift.

My God will use his glorious riches to give you everything you need.  He will do this through Christ Jesus.  Phil 4:19

Thank you, Mitzie, for blessing us with your creativity!!!  The colors, design, and words are perfect, perfect, perfect!!!  We are grateful for you and Kay!  Thank you for your love, encouragement, and support!!

I took the above photos with my cell phone quickly.  The quilt reads:

What cancer cannot do...

It cannot shatter hope

It cannot invade the soul

It cannot steal humor

It cannot kill friendship

It cannot conquer the spirit

It cannot destroy peace

It cannot erode confidence

It cannot corrode faith

It cannot cripple love

It cannot erase memories

It cannot stifle laughter

It cannot silence courage

Cancer certainly does stink, but it is so true that it cannot rob us of the things that are most important.  

Vomit and Headaches

Emilie is on chemo day 4 of 5.  Have I mentioned that chemo stinks?  Emilie is having a hard time with this round...vomiting and severe headaches.  She is having to resort to morphine for the pain which knocks her out even further.  Please pray that the headaches go away so that we can go home tomorrow after our last chemo.

We took the above shot at St. Jude last year and thought it was perfectly appropriate!

24 Hours Later and an Update

November 16, 2011, was yet another sad day for our family.  We learned that cancer had returned and Emilie would have to undergo more treatment.  Really?  How could this be?  After 17 months of remission, how could this be?  Our life was back to normal...school, friends, shopping trips to the mall, swimming, baseball games, etc.  While we were wallowing in "why us?", Emilie was on to something more productive...thinking of others.  You see, the following day, we had a consult with our oncologist and Emilie would miss her Operation Christmas Child packing party at school.  Two weeks prior, we spent a good chunk of time at the Target Dollar Spot picking out items to fill her boxes, making sure that the items were fun and useful.  Less than 24 hours following the news, Emilie decided that we needed to shop for more OCC boxes before traveling to Packard for our consult.  Off to Kmart and to the Dollar Store where once again, Emilie carefully picked special items for kids in other countries. Amazing!  Emilie continues to inspire me with her positive attitude and her quiet trust and faith in God!!  I don't think Emilie knows this scripture in her head, but it just has to be in her heart.

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 Cor 4:8-9 CEV

Here's the update...Emilie had one week of chemo over Thanksgiving and weekly IT chemo (in her spinal fluid) in hopes of putting that nasty cancer in remission.  If her test results show that she is in remission, she will undergo a bone marrow transplant in January 2012.  This will require chemo, full body radiation, bone marrow transplant and a 4-6 week stay at Lucile Packard Children's Hospital.  Our sweet Nicolas is Emilie's donor and he will have to have a few tests with a short procedure to harvest his bone marrow.  He is excited to help Emilie and is not afraid of what's ahead.  We will be living at the Palo Alto Ronald McDonald house for about 60 days following our stay at LPCH since Emilie's immune system will be at "zero".  They want us close to the hospital in the event of a fever.  If all goes as planned, we could be home 100 days from the transplant.  Emilie will be in isolation mode for approximately 6-12 months, which will be made better with Facetime and Skype. (Email me for video chat info).  That's a lot of "if then", so we are taking everything day by day and sometimes hour by hour.
We would so appreciate your prayers regarding...
1.) the cancer is destroyed
2.) chemo, radiation, and transplant go well with no events
3.) Emilie stays joyful and positive
4.) the boys stay on track with school and sports while we are gone
5.) strength, health, and endurance for Nana

I will leave you with our first-ever professionally photographed family shot by Michelle Riddle taken only four days prior to learning that cancer returned.  (Michelle selflessly donated a portion of all her family Christmas sessions to Cookies for Kids Cancer... thank you, Michelle.)
Please, please, I encourage you to spend the time, the money, and the anxiety to do this for yourself and your family.  Trust me on this one!!

 

Go NK Cells, Go!

Tomorrow is the 7th day of December.
Tomorrow is exactly 6 months from the date of Emilie's diagnosis (7th of June).
Tomorrow is the most important part of our St. Jude treatment.

Today, I had the NK (natural killer) cell collection process which turned out to be a piece of cake; a four hour piece of cake.  The procedure filtered every ounce of my blood and my NK cells were "harvested".   The cells will be processed tonight and tomorrow morning with Emilie's infusion being tomorrow afternoon.  The infusion is actually about 5-10mL of cells that will be pushed through her line in about three minutes.  Pretty easy!

My NK cell understanding is this...Emilie's NK cells did not see her cancer cells as "enemies", so they were allowed to grow crazy in her body.  My NK cells are just different enough to see her cancer cells as "enemies".  So, if there are any cancer cells that survived the chemo attack, my NK cells will seek and destroy them.  Go NK cells go!

We are very grateful that this treatment was available and that we had a parental match.  God is so good!
Please pray that 1.) the NK cells will identify, attack and kill any leftover cancer cells and that 2.) Emilie will not have any adverse reactions to the infusion.

Mosquitos and Fried Okra

This morning we were told that the chemo and subsequent NK therapy was on hold due to Emilie testing positive for the West Nile Virus.   West Nile Virus?   How crazy is that?  We see one mosquito a month in Scotts Valley.  What we learned was that WNV can cause havoc, very serious havoc, in patients with compromised immune systems.  The NK therapy uses immune suppression to ready the body to accept the NK cells; Emilie's counts are looking great now, but the chemo would drop her counts quickly.  Eric and I were very upset that this therapy would not be an option for Emilie. As I sat here, a little irritated with visits from infectious disease docs, nuerologists and oncologists, I reminded myself that God is in charge even in the midst of total chaos and confusion.  I entrusted Emilie and her medical treatment to God.  Still irritated and a little angry, I thought through the logistics of packing our belongings here at the hospital and at the RMH, returning a rental car not at the airport, hitching a ride to the airport and then managing my Supergirl through the airport, through (annoying) security and on the airplane by myself.  Questions from Eric that I couldn't answer were irritating me too.  I couldn't wait until the attending oncologist came through the door so that I could give him Eric's phone number so that he could answer all his questions.  Six hours after the WNV news, the doc did walk through the door with the news that Emilie's WNV results were recorded in error and that, in fact, she was tested negative for the WNV.  Tears of happiness flowed and I was so full of gratitude that God was still really in control and that Emilie would still have the opportunity to have the NK treatment.  Both Emilie and I have more testing, but are so close to the end.  Emilie started her chemo today and did great with her first dose.  She still has a great appetite...that's where the fried okra comes in.  Dinner for Miss Emilie tonight consisted of a huge hot dog, chocolate shake, a push up and fried okra.    So y'all, I leave you with this scripture, which I posted as a self-reminder but if it works for you...RIGHT ON!  (Please no grammatical judgement from all our wonderful readers in education.)

Rad + Awesome = Rawsome

Emilie loves to cook and had a last minute idea to play "Chopped" at home.  Nana was at the store picking up some groceries for us when Emilie called her to bring home three mystery ingredients.  Nana brought home a white cake mix, chocolate chips and walnuts.  She went to town making a white cupcake topped with faux chocolate ganache and a candied walnut.  The girl loves to create in the kitchen!

Out of the blue, Emilie told me that it was "so rad and awesome" that she has been home 25 days without getting sick.  I agreed and together we called it "RAWSOME".  The "rawsomeness" will come to an end on Monday when she goes in for her second to last chemo treatment.  I guess it's really still "rawsome" in that we can see the light at the end of the chemo tunnel.  She will be having a high dose chemo, so please pray that her little body handles it well and that she has no funky side effects.

EKG, Echocardiogram and a Quick Pity Party

Yesterday, Emilie had to have an EKG and echocardiogram.  Nothing new, just tests that are done prior to each chemo treatment.   As she was having her echo in the darkened room, while happily watching Hannah Montana, I was having a pity party for us without the cake and balloons.  I wondered why this child of mine had to go through cancer and why I had to sit and watch her heart working on a monitor.  In the last three months, I have seen images of practically every part of her body.  Really?? I thought the only ultrasound images that I should have to experience are those during pregnancy.  As the tech did her job, I quickly left our pity party and realized that I was witnessing a perfectly designed heart.
A heart made by the God who loves Emilie very much!
A heart that has endured horrible cancer meds.
A heart that has endured a lot of sadness.
A heart that loves others.
A heart made by God!

I thought of my "Emilie" pregnancy and how I loved hearing her heart beat at each doctor's visit and how I loved seeing her little body in the ultrasound images.   While pregnant with Emilie, I had a favorite song by Steven Curtis Chapman call Fingerprints of God.  The lyrics perfectly matched my feelings and since I'm not that great with "words", I planned on using the lyrics on a scrapbook page documenting Emilie's life in my belly.  Never got to the scrapbook page, but since this blog is our new scrapbook.....here goes!

Never has there been and never again

Will there be another you

Fashioned by God's hand and perfectly planned

To be just who you are

And what He's been creating

Since the first beat of your heart

Is a living, breathing

Priceless work of art

And I can see the fingerprints of God

When I look at you

I can see the fingerprints of God

And I know it's true

You're a masterpiece that all creation

Quietly applauds

And you're covered with

The fingerprints of God

Words

Word art using Bendaroos by Emilie.

These are the words of a girl with leukemia.
These are the words of a girl who must use a wheelchair because her legs are not "working".
These are the words of a girl who has thinning hair.
These are the words of a girl who spent the majority of her summer vacation in a hospital.
These are the words of a girl who will not start school with her classmates and friends.

Summing it all up, friends, I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious—the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse. Put into practice what you learned from me, what you heard and saw and realized. Do that, and God, who makes everything work together, will work you into his most excellent harmonies. Philippians 4:8 (The Message)

All You Need Is Love and ...

Art!
Today seemed to be a good day to break out the art supplies and create. 
A quick update....Emilie was readmitted to Stanford on 8/10 for a lumbar puncture, bone marrow aspirate and a round of chemo.  She was admitted earlier than planned due to her counts being "good".  We spent a mere 6 days in the hospital and are now back at home.  The results from Emilie's procedures have come back negative and we are so grateful!  She is doing great regarding the leukemia and we are still praying that God restores her legs to "soccer status"!  Oh happy day!  Our Frosting, however, decided that he was going to get sick.  He has been banished to Nana's for recovery.  Stay tuned for the next update.

May God, the source of H O P E, fill you with J O Y and P E A C E through your F A I T H in him. Then you will overflow with hope by the power of the Holy Spirit.  Romans 15:13

The Good, The Bad and The Chicken Pot Pie

The Good....Emilie's counts recovered quickly after her last chemo treatment.  We are also thrilled to have had 14 days at home with NO fever!

The Bad....Really, not so bad.  Since her counts are up again, her doctors want to start her next chemo treatment right away.  We have gotten fond of "home".  We are off to Stanford tomorrow morning for a 1:00p.m. bone marrow aspirate and lumbar puncture, followed by R & R at the lovely Bass Center!

The Chicken Pot Pie...Emilie has been havin' a hankerin' for Nana's chicken pot pie.  Nana came through with the fixin's and left the pie crust for Emilie to assemble on the pies.  She did a great job rolling and making a "floury" good mess.

Check back for updates and please keep praying for great results from her procedures, pray that her legs will be restored to "normal" and pray that her next chemo treatment will go smoothly.

Helpers

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!

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. 

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.