Monthly Archives: October 2012

Light the Night

 

Light The Night!!!

 

With Emily’s leukemia diagnosis in February, one huge, extended family, along with their many friends, was pulled into a new world.  More like flung into a new world.  It’s not a world in which anyone ever wants to be.  It’s a world that has a lot of not-so-good – like worrying about a little girl’s future – spinal taps – bone marrow biopsies – chemo – steroids –  side effects –  germs –  multiple hospitalizations for random fevers – the never-ending coordination of who will have the other kids on which days  – and trying to keep some kind of routine in a new, unordered world.  All of this is necessary in this new world, but it can overwhelm you.

Posing next to Emily’s picture in the “Remembrances Tent.”

Ethan, William, Adam, Sophie, Chrissie, Emily, Grammie, and Bapa

On the other hand, this new world is also FULL of lights! Last night, hundreds of people – all of whom have been touched by their own versions of this new world – came together to join in the Leukemia Lymphoma Society’s Light the Night Walk – a yearly fundraiser and celebration. And “light the night,” we did!  The event was held at the State Capitol building – it started at 5:00 pm with speakers, entertainment, food, and support – and culminated at 7:30, after it got dark, with a walk around the State Capitol grounds, carrying lighted balloons – white for current cancer patients and survivors, red for family and friends, and gold to honor loved ones who had passed away. Every person walking was walking for someone – someone in their family, like us – a friend – a co-worker – or just walking to support people they don’t even know.  Every person there was a light.

 

 

Our Light the Night t-shirts said “I walk – because someone’s life depends on it” – Emily’s t-shirt said “I walk – because my life depends on it.”

Our team was called Warriors for Emily.   Emily was there in full Emily battle attire – her own Light the Night t-shirt, white tutu, polka-dot leggings,  hat, scarf, and sparkly, pink shoes – and that feisty, Emily spirit that has charmed so many and kept her fighting.  Her support team included her family – Chrissie and Jason, Ethan, Adam, William, and Sophie – both sets of grandparents – Jason’s brothers and their families – and many, many employees of the company for which Jason now works, BMC Building.

The Love Family

Halfway through the walk, Emily decided she needed to “walk by myself.” How precious and wonderful, because just six months ago she couldn’t even stand on her own.

 

Emily’s spirit caught the attention of many people last night – including people who make their living helping patients like Emily.  We met several pharmacists from U.C. Davis Medical Center, where Emily is treated – people who work in the bone marrow transplant department at the Sutter Cancer Centers – and several ladies who work at the Blood Source, both in the transplant center and with the blood donations.  All of these people make their living helping patients – but this is also their calling.  They are lights in our world.

Dancing the night away!

The brightest light, in our eyes, is Emily.  After the walk, there were bands playing on the steps of the Capitol, and Emily’s brothers and sister, along with several cousins, climbed – or were lifted – up on a garden wall so that they could dance to the music and not be in the way of the walkers on the sidewalk.  Emily, in true form, demanded to be placed on the wall so that she, too, could dance!  She stood up there with her smile and her pacifier, in her battle attire, and danced and jived to the music!  What Emily doesn’t know is that she is our music – and she lights our world.

It’s a bit blurry but Emily has rhythm and she was moving to the music!

On another note, this past week, Emily finished a two-week marathon treatment that included two spinal taps and eight days of chemo.  Her ANC was 230 (minimum for decent infection fighting is 500), as of three days ago, but her nurses are expecting it to be zero by tomorrow.  She will go in tomorrow for a platelet and possibly a blood transfusion – then will get chemo and a blood transfusion on Tuesday.  Her hemoglobin is low but her body is too little to be able to handle too much fluid volume in one day.  Next week will be chemo on Tuesday.  After another couple of weeks to recover, she will be through with the Delayed Intensification stage of her treatment and on to the Maintenance phase, towards the end of November.  Please continue to pray – as we know you will.  And, again – and this can never be said too often – thank you!!!!

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The Nike Woman’s Marathon and Gods Plan

            Driving through a residential area in San Francisco yesterday, trying to navigate back to Highway 101 at 5:30 am, I had a moment of panic thinking “where am I, Lord please let the GPS not fail me” and then there came a split second where I thought “no matter how much you thought you were in control, you in fact are not.” This thought lingered with me and throughout the day, I dwelled on it, dissecting what that thought meant. What I gleaned from it, was that though you are not a puppet in this life, as you have the freedom of choice, the master plan was pre-designed and your choice of road A or road B both end right where you were supposed to be all along. I may have had to take a twenty minute tour of a really stunning neighborhood in San Francisco, but my end destination was the same. Transferring to the right freeway would have been faster but not as pretty. The two paths were simply put; different.

            My mind ran with this as it usually does and I thought about why we were driving to San Francisco at 5:30 am in the first place. Emily has cancer. Upon hearing that news, Jennifer, one of Emily’s Aunties, needing to channel some of the anxiety from the news of Emily having cancer, entered herself in the Nike Woman’s Marathon. Having asthma and never having run a marathon, she linked up with Team in Training to help raise funds for the Leukemia Lymphoma Society and in return, be trained for her first ever half marathon. Heather, Jennifer’s friend ran as well, both in honor of Emily.

            Sunday arrived so at 3 am, part of the family loads up the cars to go pick up Christina and the kids so that 6 children, 6 adults, in a caravan of two cars, can start the drive to San Francisco to cheer Jennifer and Heather across the finish line. So we’re driving, the sun is starting to crack across the Bay and Chris, Jennifer’s husband calls to say that he and their 4 kids are searching for parking. 10 children and 7 adults have arrived in San Francisco at dawn to cheer on two women running for Emily. So is this road A or road B I thought? I am not one to doubt that Emily having cancer is part of the master plan but I have heard people voice questions like: how could this possibly be part of the plan, why would God give cancer to someone so young, what did we do wrong to make this happen, Is God punishing us? Basically, did we take the wrong path? All of these thoughts are Satan’s way of taking something God inspired and using our worry as a tool to divide us from God. Truly, no matter the end destination that God has planned, we are right where we are supposed to be. 

            With this reminder, as our gathering of 17 watched people start to cross the finish line, the children bundled in their jackets leaning over the barricade to see or sitting in the camping chairs, dosing under their blankets, I smiled because I know that Gods plan for Emily is something huge. So many have been affected by her story, so many people closer to God, so many people hugging their own children tighter, reaching out to lend a helping  hand. The community that has surrounded Emily and her family has been overwhelmingly HUGE!!! This week, a woman who wanted to remain anonymous delivered ten bags of non-perishable items to the Loves and came back the next day with bags full of perishable food items!!! When she finished unloading the bags and handed Christina a bouquet of flowers, Chrissie burst into tears. Every time the need for a babysitter arises, Christina feels horrible asking people to give more of their time yet I usually have 4 or 5 people offering to help. I can’t remember a single time in the last 8 months where there has been an emergency over child-care! Even when someone calls to say they have to back out because their own kids are sick, there is always someone there to fill in the gap. How can this NOT be part of Gods plan?

            Tired of standing, I turned to sit with the kids and noticed Emily sneaking Salami out of my bag. I nudged Christina to look, apologizing because I know Chrissie wants the kids to be Vegan. She laughed and turned back to watch the race. The rest of the kids were devouring the grapes and apples that had been given to them but Emily was ripping bread off the baguette in my bag and folding the salami between the bread as she had seen me do. She would take two bites; finish the salami and then stuff more into her piece of bread. When she caught me watching her, she smiled and raised her bread in triumph saying “Babbie wook!” Of any of the children God allowed to have Cancer, this clearly was the one most up for the challenge.

            The sun had risen but was hidden behind the thick fog, the mist San Francisco is known for began and Jennifer sent a text message to Chris that they were on mile 8. Just then, a woman who was about to finish the race, ran to the sidelines. She quickly emerged back in the alleyway pushing a wheelchair containing a teenage boy who had the classic tufts of hair scattered across a balding head that signified he had some type of cancer. Us girls starting crying as the woman ran the last 0.1 miles pushing the boy across the finish line. Our family is not alone in the battle with cancer. We are not the only ones faced with the reality of what the end destination may be and in that moment, I selfishly prayed that Gods plan for Emily is to be the Doctor that finds a cure for cancer or something else that stems from her experiences. 

            I don’t know who saw them first but soon everyone was cheering that Jennifer and Heather were coming. Chrissie had made signs; the kids were on people’s shoulders, asleep in chairs, or standing on the stroller screaming “mommy”, “Auntie Jenny”, “Heather”. Just as Jennifer hit the 13 mile mark, with her arms up in the air in victory, she spotted us with the help of her running mates who were pointing in our direction, and burst into tears. Christina waved her over and in a daze; Jennifer abandoned the race for a minute to come say “hi”. Christina lifted Emily over the barricade and Jennifer posed for a picture. When Chrissie told her to take Emily with her, Jennifer paused, confused, and then crying, turned around to finish her race with her running mates who had stopped to wait for her. We were all crying as Heather, Jennifer and Emily finished their first half marathon and Emily threw hers arms in the air mimicking those around her.

            As we all gathered on the other side of the finish line for pictures and hugs, one of the boys expressed how “Awesome” the day was. Though everyone was tired, cold and hungry, we were all still smiling, laughing and enjoying the day. Tom was taking pictures of the beach, three of the boys were practicing their karate moves on each other, Joah was melting down as he was over stimulated and under napped, Jay was talking to some woman who didn’t have phone reception either and Emily was showing everyone the Tiffany Necklace that Jennifer had given her. As Jennifer put it, “this was her race”. Pictures done and the chaos wearing on the adults, Jennifer and Heather left to meet up with the TNT group and be bused back to the hotel. The rest of us started the trek to the cars.

            After the three hours it took to get out of the city, due to how far away the cars were parked from the finish line, 25,000 runners with thousands more spectators, and two sports games in the city the same day, physical exhaustion set in. Yet there was a peace over the cars. We made our way to Emeryville, to meet up with Jennifer and crew for lunch as no one wanted to spend one more minute in the city. Heather and Jennifer had showered at the hotel and were ready to devour some food. With our party having grown to 19, the Cafeteria at IKEA seemed like a fabulous idea. Our party clumped together and as the stomachs registered food, our marathoners became more talkative and the kids got a boost of energy. We visited for a while and then everyone said their goodbyes.

            Climbing back into the car, wrapping a blanket around Adam and myself, as he and I had agreed that it was time to go to sleep, I thanked God for the journey that He is taking us on. I asked that He toughen us up as I personally feel very weak at times on this path. Especially when Emily is hospitalized and I asked that He prepare us for the end destination. Though it’s not the easy route as Highway 101 would have been 12 hours before that moment, it certainly has forced us to grow closer to Him, to grow closer to our friends and family that reach out to support the Loves and it certainly has forced myself to treasure every waking moment I have with my family. I drifted off to sleep knowing that 19 of us spent a long, chaotic day in San Francisco because Jennifer and Heather ran a Marathon in Honor of Emily because Emily has Cancer and that is all part of Gods plan.

Home – again – and never tired of it!

This is the sign of a child who has been in the hospital too much – that she’s totally comfortable with her IV pole, walking it all around her room so that she can get to where she wants to go. Not to mention it’s also a sign of her resilient, little spirit.

Emily – and Chrissie – were discharged yesterday!  It was welcome, welcome news.  After her night of 103-degree temps, she had a temp of 102 the next night, so the doctors started her on Vancomycin, a stronger antibiotic, on Sunday.  There were no significant temps after Saturday night.  By Tuesday, all of her lab cultures had come back negative, she’d stayed fever-free, and her ANC had risen to 100.  As Chrissie said, Emily has been with her Oncology doctors long enough now that they know her and how she responds.  In the Spring, shortly after her diagnosis, they wouldn’t let her go home until her ANC was over 500.  Now, the doctors just wanted her fever-free, to have been on the Vancomycin for 48 hours, and to have an ANC that was trending upwards.  All of which, Emily’s body was doing!  Yea for Emily and her spunky, little nature!

The staff is so amazing at U.C. Davis Med Center – one of the doctors brought Emily a froggie finger puppet to make her smile! Her charge nurse, Nicole, brought her a beautiful, Princess gown with a fur hem – and another favorite nurse, Michelle, brought her a duckie-swimming-in-the-water blankie that had been knit by one of the many Volunteers who do things just to make these kids’ lives a little cozier.

Please continue to pray for Emily – that she will be able to avoid, as much as possible, catching any more viruses.  Also pray for her brothers and a couple of cousins who have turned up sick – leading us to think that Emily caught something and then passed it on.  Families do have to stay together, you know! And know that we pray for all of you who are helping this family and praying for them.

Emily is sorting some of her many “fiers” – known to others as pacifiers – while she and Mommie are waiting to be discharged.

This is what love is —-

This is what love is —

THIS is what love is —
Love is shelving your life – again – when your baby gets sick – again.  Love is dropping all of your “girls’ weekend” plans – while the Dads and boys are out-0f-town, camping – and taking your sick, baby girl back to the hospital when she starts running fevers. — Love is caressing your baby’s head to help calm her to sleep when her temp spikes to over 103 degrees.  — Love is feeling guilty – again – when everyone around you steps in to help, and feeling like you’re letting down your husband and other children.  — Love is releasing Emily – and all of this – to God.  Not so easy to do for a tired, concerned Momma.

Emily always wants to stay in the chair-bed with Momma, so Sophie made herself comfortable in the crib!

Emily is back in the hospital.  She started running temps again – 99’s and low 100’s.  The protocol is:  if Emily runs three temps that are 100 or higher, or one temp 101 or higher, Chrissie is to call the Oncologist, and Emily is usually admitted.  That is what happened yesterday.  Labs and cultures were drawn and an antibiotic was started – same scenario as last time.   Emily was very susceptible this week as her ANC/immune system count was only 80 on Thursday and her white blood cell count was 0.5.  Basically, she doesn’t have any immune system power to fight whatever virus or bacteria has attacked her body. Today, her ANC is 24.  If, as with the last time, the cultures come back negative for bacteria, we will have to assume it was a virus.  And there are plenty of them out there right now.

Yesterday evening – and again, in the middle of the night – Emily’s temp spiked  to over 103 degrees.  She was a sick, little girl.  The high temps hit her pretty quickly and the first time, she just laid down on the chair-bed in the room and pulled her blanket around her.  Today, her temp was down to 99’s – but had increased again to 101.4  after she woke up from an afternoon nap.  We shall have to see what happens tonight – please pray for her.

On another note,  Auntie Jennifer is continuing to train for the Nike Half Marathon for the Leukemia and Lymphoma Society – in Emily’s honor.  Jennifer raised enough money to have Emily’s name printed on all of the Central Valley Team In Training jerseys!  Thank you to everyone who donated towards that.

Also, in Emily’s honor, Jennifer made a tutu to wear to the Team In Training banquet, in honor of Emily, who was the tutu Princess during her earlier hospitalizations!  Please pray for Jennifer, her friend, Heather, and Marissa Tingus, Emily’s cousin-in-law, who are all going to be running this half marathon on Sunday, Oct. 14th.

Auntie Jennifer – honoring Emily’s spirit! And showing that she shares it, too!