Monthly Archives: April 2012

A brief Update

Despite normal temperatures and negative cultures, Emily wasn’t able to go home this weekend as we had hoped. The pediatric nutritionist is concerned about her diet and the doctors want her ANC higher.

Emily’s previous enthusiasm for food has gone by the wayside and while she still asks for food frequently, she seldom eats it. The possiblity of using a feeding tube to provide nutrition has been suggested and the family is waiting to hear the opinion of Emily’s lead doctor.

Grandpa Tom gets Emily to eat some cheerios

Emily’s ANC was 30 on Saturday and made a very small increase to 40 on Sunday. Unfortunately, the doctors want it above 250 before releasing her for home so we’ve got a ways to go.

Tomorrow is Emily’s second birthday and she has already begun celebrating a bit early! The Child Life Team came today to discuss plans for a small celebration tomorrow after her morning spinal tap surgery and we’re hoping the real birthday treat will be getting to go home to her family!

Emily shows off her new Twilight Turtle Planetarium from the Howells!

Thank you to everyone for your continued prayers and support. And a special BIG thank you for everyone providing meals and babysitting for the Love family!

Fevers, Antibiotics, and Nutrition, oh my

It was a late night getting admitted to Pediatrics after Christina and Auntie Elisabeth took Emily to the emergency room. There was an Auntie swap, and Aunt Gaby took over, spending the night with momma and Emily in the new double hospital room on the 7th floor.

We got clarification that, despite sharing her room with another patient, Emily is still actually in isolation. Due to her previous MRSA-positive test, Emily will always be considered a possible carrier. However, MRSA is only spread through touch so, while she doesn’t have to stay in a negative pressure room, she is not going to be allowed to leave her room. No play room, no hall-walking. When Emily was immobile this would have been challenge enough, but now that she’s finally regaining some physical strength and enthusiasm, this is going to be an even greater difficulty for our playful Stitch.

Despite the fact that Emily’s temperature had gone down by the time she was checked in at the E.R., Emily was put on on a general antibiotic last night. A second antibiotic, Vancomyacin, was begun this morning just in case the fever was caused by MRSA. Tomorrow, an ethanol lock will be started on her Broviac lumen to flush any possible bacteria out and ensure the lumen is infection free. We don’t mess around when Emily has no immune system of her own!

If Emily’s temperature remains normal and her cultures come back negative, she could be released after 48 hours (tomorrow night). However, in the meantime some of Emily’s other physical conditions have come to the doctors’ attention and raised concerns.

Emily has been eating and drinking less but has had persistent diarrhea. With her low protein levels, sustained facial puffiness, and some vomiting today, the dietician has been consulted and there is discussion of keeping Emily hospitalized while they boost her nutrition intravenously or look at other dietary options. She was given morphine for pain (possibly as a result of her chemotherapy on Tuesday) and Zofran for nausea, in the meantime. Hopefully these will help Emily feel well enough to eat on her own.

Emily received two blood transfusions this morning as scheduled. Getting healthy blood always perks Emily up and visitors today got to see a playful, happy girl. However, it also means that Emily needs more distraction than her restrictive environment allows. If you’re thinking about visiting Emily and Christina this weekend, give Chrissie a call first just to make sure they are still actually there!

Please pray specifically for Emily’s physical body today. The chemotherapy has done a number on all of her systems and the nutritional concerns are really just a small part of that problem. Please pray that her body stays strong, that she’s able to get the nutrition that she desperately needs, and that she be able to get it at home rather than staying in the hospital!

*** The previous post was updated to reflect that Emily’s temperature going into the hospital was 100.5 (not 105). Apparently, 105 would have been a pretty big emergency. This is one of those reasons that having the Auntie without children write the blog might be a bad idea!

Back to the emergency room

Just four days before Emily’s birthday, she has returned to the U.C. Davis Emergency Room and been readmitted to the pediatrics floor. Emily began having minor fevers late Wednesday night and throughout Thursday. The fever spiked to 100.5 on Thursday evening, prompting Christina to call the on-call Oncologist as their protocol requires. Due to Emily’s low ANC (230), any fever or illness could be devastating for Emily right now and the ER doctors decided to admit Emily for further tests and observations.

She moved back in, for a hopefully brief period, late Thursday night and is sharing a hospital room for the first time. While inconvenient for family staying with Emily or trying to visit, it is a good sign that she was not immediately placed in a negative pressure room due to her previous positive-MRSA result. It also means Emily may get to walk around and play more than she did during her last hospital stay; a definite blessing since Emily has been more mobile over the past two weeks then anytime since before her initial diagnosis.

Please pray for Emily today!

  • Pray that the fever (which was, of course, gone by the time she was checked in at the E.R.) remains normal and that lab tests do not reveal anything abnormal. 
  • Please pray for Christina, while living in the hospital is becoming routine, it is hard on a momma with 4 other children who need her at home and nursing staff required to wake Emily up for vitals multiple times throughout the night. 
  • Please also lift up the older Love children who will wake up without their mommy and little sister over the next few days. 

More Cheese, Please!

A meeting with Emily’s team of doctors today revealed that her protein levels are abnormally low. Normally supposed to be between 5.5 to 7.5, Emily’s are at 3.5.

Protein, and another blood plasma constitutient, albumin, are what help Emily’s circulatory system retain water (a process called oncotic pressure). Without these, we get the puffiness we’ve all noticed in Emily’s face and extremities that we previously thought was a result of the steroid.

Overall, the doctors seem unconcerned; telling us repeatedly that there’s not a whole lot to do, we’ll wait it out, we just need to watch and see, and eventually the protein levels should right themselves. Nonetheless, anything abnormal makes us uncomfortable.

It’s a given, with all the toxins being pumped into Emily’s body, that some things will be out of whack. And it is likely that the low protein is a result of some of her chemotherapy drugs affecting her liver. However, there are other possibilities, such as a gastroenterology problem that would be a separate issue in and of itself and would require a referral to another hospital, as U.C. Davis does not currently have a gastroenterologist on staff. A urine test is being done to help determine the nature of the protein deficiency and we basically have to do as the doctors say: wait and see.

In the meantime, we did get some good news that Emily seems to be eating the right foods – cheese and chicken nuggets are high in protein and happen to be Emily’s favorites! We also found out that the strict rule against fresh fruits and vegetables isn’t quite as strict as we thought and, with a lot of caution, Emily can still have a little of her favorite fruit: bananas. Otherwise, less fiber was recommended while still giving Emily whatever she desires in order to meet the pickiness her loss of appetite has caused.

Doctors office playtime

Emily’s platelet count was extremely low today and she received a transfusion in order to get her counts up before her next spinal tap tomorrow. Her ANC is also low (30, when it needs to be above 500). Her lab work this morning showed a slight rise in her protein and albumin levels from the results that originally raised concerns last week but they still remain below normal.

Please join us in praising the Lord that today’s news wasn’t a major setback and please pray that Emily’s body finds balance as it deals with the many toxins and upheavals to her system. 

Special beads for a special girl

Emily’s new phase of treatment has kept her quite busy. It has kept everyone busy! But while we are all tracking her journey by blood counts and number of appointments, Emily is keeping track with her beads of courage.

Emily’s beads are a marker of every procedure and milestone she undergoes throughout her treatment. They are a reminder of everything she has survived and the courage she has as she continues to fight. Christina keeps track of every chemo treatment, every needle poke, every x-ray, biopsy, and infusion so that Emily can get the beads she deserves. Her strand is continuing to grow, and is already much longer than the picture below shows. It grows so fast, it’s difficult to keep up!

Many people have expressed being moved by the beads of courage after our first post. The beads are, rightly so, becoming a symbol of courage for many of us. Emily is just ten days away from her 2nd birthday and already she has demonstrated a strength of body and spirit that is encouraging for all the adults around her. Friends and strangers are using Emily’s beads to share their own stories, to give support, and to remind us all to keep Emily in our prayers.

At the end of her strand of beads above are two new special beads. The first, a dragonfly, was given to Emily by a family friend, Marlene. The dragonfly means “believe” and reminds us all to believe in the 100% cure we are praying for daily.

Joy & Marlene bring Emily a dragonfly bead

The little kitty cat bead right after it was given to Emily by a woman who she has never met but who was touched by Emily’s courage. Calling herself the “Crazy Cat & Cancer Lady”, she sent Emily this bead along with a note that shared her own story of finding out she had a brain tumor and the many treatments and tests that came after. She told Emily the cat bead, “with her sunny smile and friendly wave, is to remind you that God and His people love you and see you, and that you have lots of friends all over the world!”

Some of those friends, students of a family friend, created their own strand of beads in Emily’s honor. Displayed in their classroom, these paper beads are a reminder for all the students to keep Emily in their prayers.

Emily’s Consolidation treatment has continued with a heavy stream of chemotherapy drugs and frequent trips to the hospital. Her blood counts have dropped, making her neutropenic, and a recent call from the doctor has raised concerns that something in her labs is not quite right. In the midst of this chaos and uncertainty, Emily has had good days. After whole blood and platelet transfusions yesterday, Emily had full color in her cheeks and was mobile and playful in a way that reminds us all of the little Stitch she used to be before Leukemia became a reality of our lives. It is amazing how a little healthy blood can transform this sick child.

That's a happy child!

As always, we share these happy times with all of you while asking you to keep Emily and her family in your prayers. As her beads symbolize, Emily is undergoing so much. But she is strong and spirited and in the arms of our Lord.  We pray for a day her body can keep itself healthy and her smiles can warm our hearts every moment.

Please keep these requests in your prayers:

  • Emily will go see her Oncologist on Monday to hear the results of recent lab work that we have been told was “not as expected”. Please pray this is not another setback and please pray the family has peace as they wait to receive the news.
  • Please pray for Christina, that she gets rest and opportunities to relax. Please pray for a mother’s peace as she carries the heavy burden of wanting to protect her child and that she may trust in the Lord and the doctors to do everything they can to keep Emily safe.
  • Please pray for Ethan, Adam, William, and Sophia – Emily’s older siblings. Pray that they continue to feel loved and safe and know how special they each are. Pray for understanding as they live with Emily’s disease and all the changes it has brought to their lives. Pray that they also have strength and courage. They are all four little Warriors alongside their sister.

Over $135k for the Children’s Miracle Network…Thank you!!

Thank you to everyone who donated to the Children’s Miracle Network’s Care-a-thon Sacramento! With your generous support, more than $135 thousand dollars was raised for the U.C. Davis Children’s Hospital and little warriors like Emily!

Emily’s online fundraising page brought in over $7,315 alone! In the hour her parents spoke on the radio, another $1,200 was raised!

AnneMarie Smither’s Big Spoon fundraiser added to the cause and even Emily got to enjoy some delicious frozen yogurt!

Family friend, Asher Styrsky and the Styrsky Insurance Agency, generously matched donations to the Care-a-thon and the Love family, putting forth $2,500!

Emily enjoying yogurt at The Big Spoon

Over the past three days, if you have been listening in to The Wolf 101.9 or watching Fox 40 News, you’ve probably heard some amazing stories of strength and perseverance from families just like the Loves. The Children’s Miracle Network not only makes preeminent hospitals like U.C. Davis available for sick children but it also provides programs and people that look after the emotional health of the entire family.

No one but our Lord can take away the pain and fear that comes with Emily’s battle but the staff at the U.C. Davis Children’s hospital does everything they can to provide encouragement, hope, compassion, and laughter.

There are few words adequate enough to explain what this organization has given to the Loves over the past two months and what they will continue to provide for children and families just like them. But it has been an honor to help raise the funds needed to maintain the Children’s Miracle Network into the years ahead.

THANK YOU!!

Watch here for the Fox 40 News clip of the Love Family’s story and listen here for a music montage played on the Wolf 101.9.

The Loves with Wolf DJ Chad Ryan

The Care-a-thon goes Live!

The Care-a-thon has arrived!!

Yesterday, today, and tomorrow, Fox 40 and The Wolf 101.9 are partnering with the U.C. Davis Children’s Hospital to raise $100k for the Children’s Miracle Network, an organization that provides support services for the families of children suffering major injuries and illness.

At the Infusion Room

Over the past three weeks, Emily and the Love family have served as Ambassadors for the Care-a-thon, raising over $7,000 for local Children’s Miracle Network programs!

From music therapy at the hospital to stuffed animals in the infusion room, the staff at the U.C. Davis Children’s Hospital has provided constant entertainment for Emily. They have also helped the Love family with insurance paperwork, arranging immunization appointments for the older Love children, and providing them with books and toys to help explain everything that little Emily is going through.

The Children’s Miracle Network has been a huge blessing for the Love family and now the Loves want to make that support possible for other families facing difficult times. With two days left in the Care-a-thon, you can still get involved by donating to Team One Love online or watching and listening as the Love’s share their story with the Sacramento Community.

Tonight (Thursday 4/12), the Loves will be featured on the Fox 40 ten o’clock news in an interview that details the discovery of Emily’s Leukemia and the challenges and blessings the family has faced since.

On Friday morning, Jason and Christina can be heard telling their story by tuning into radio station 101.9 The Wolf. There will be a number you can call to pledge your support for the Children’s Miracle Network and, if you are a business, you can match the amount raised by Team Love.

Another way you can support the Care-a-thon, and get a yummy treat while you’re at it, is by visiting The Big Spoon in Fair Oaks, CA on Friday the 13th. Mention the Children’s Miracle Network and 30% of your purchase will go to Team Love’s campaign.

So many people have helped make the Love’s journey bearable over the past two months. Help them pay forward that love and support to other families by supporting the Children’s Miracle Network today!

Help the Loves support other local families with Warrior-children like Emily!

Moving to the next phase

Since receiving news of Emily’s Minimum Residual Disease at the end of the normal one-month Induction phase, we have been praying for good news on her remission. That news finally came yesterday when Emily met with her oncologist at the U.C. Davis Medical Center.

The results of last week’s biopsy have actually not been completed, yet Dr. Ducore says he has enough information to move Emily forward to the next phase of treatment, the Consolidation Phase. In fact, he explained that Emily was, by definition, in remission three weeks ago (remission being defined as having Leukemia cells below 5%). However, her counts were higher than average, which is what prompted the doctor to schedule an additional two-weeks of Induction chemotherapy. It is better to pile on extra drugs in the early stages of Emily’s treatment, then to wait till the end and find out not enough was done.

We’re beginning to understand that treatment decisions aren’t always easily explained or understandable. Dr. Ducore has been a pediatric oncologist for over thirty years. He is a lead researcher in the area of children’s cancer and was named a U.S. News top doctor in 2011-2012. No matter how much reading and research the family does at home, in the end, we trust Dr. Ducore to make the best decisions for Emily’s health.

The decision he is making now is to place Emily on a high-risk treatment plan. “High-risk” raises a lot of concerns for us but Dr. Ducore has assured us Emily’s overall chances have not changed much. She is still looking at a 76% permanent cure rate. The main difference between a high-risk plan and standard or low-risk, is that it pushes a little harder to ensure the best results. Again, it is better to push now, in these early stages, to make sure that Emily has the best chance for a long and healthy life.

Playing house with Grandma!

Today marks the beginning of Emily’s Consolidation Phase, the goal of which is to eradicate the Leukemia in her spinal fluid. The first four weeks will include doses of intrathecal chemotherapy by way of spinal taps, as well as up to five days of chemotherapy medications. This week alone, she will spend four days visiting the hospital infusion room. She will then begin receiving a daily oral drug administered at home.

Next will begin Emily’s Interim Maintenance Phase, a period in which she will need to be regularly hospitalized to receive high-dose Methotrexate, a chemotherapy drug that causes severe side-effects and will require an antidote, or “rescue”, to make it less toxic to Emily’s body. This drug is still a few months off, but it is already looming rather frighteningly on the horizon.

This new phase is supposed to be a “lightened up” period, but already the family’s calendar is getting filled with trips to the hospital and it is easy to feel overwhelmed. One baseball schedule has been eliminated after Adam fractured his right arm this weekend jumping off a ladder, but the Interim Maintenance Phase and its 3-4 day hospital stays will be coming right as the family’s homeschool charter program is to start up again.

Emily and her family will continue to need the support and prayers of her family and friends in the weeks ahead. The new drugs will bring increased side-effects, lower blood counts, and greater worry. Just below is a message Christina put on facebook asking for continued prayers:

Today is the beginning of an intense few months of treatment for Emily, and I’m realizing this morning how much she will need to endure to make it through. Please pray for strength in her little body and for fight in her spirit. And please keep her siblings in your prayers too, as they will be affected deeply with her and I at the hospital so much and her feeling so sick. ~Christina Love

We are thankful that Emily’s treatment is moving forward, but now more than ever, need to stay strong, be supported, and have faith in God’s healing power over Emily’s body and all of our hearts.

Below is a short video of Emily being entertained at the hospital yesterday with a stuffed pig she was given by the hospital staff:

Laughter is the best medicine

We’ve all heard that laughter is the best medicine, but in the midst of battling cancer, sometimes it’s the hardest medicine to come by.

Luckily, Emily “Stitch” Love has always been good for a laugh or two…or ten.

Since coming off her daily steroid and earning a brief break in chemotherapy treatments, Emily has perked right up – offering goofy grins and ear-piercing laughter for family and friends.

Since all of us walking this road with Emily likely need some medicine of our own, we decided to share some of her laughter with all of you!

Be warned, what lies ahead is pure grin-inducing, laughter producing FUN (and at times may cause dizziness)…

To start us off, here’s Emily coming out of her “shell”:

Peek-a-BOO!

Here, she’s enjoying hanging out with her Aunts:

Grinning with Auntie Plum

That's as close to a smile as you get with a mouthful of chips!

A post wouldn’t be complete without a food picture, so here’s Emily grinning from ear to ear over her platter of snacks:

Now for some video! Emily asked to swing and Auntie Gaby valiantly volunteered to do the honors of being her safety belt. Below is a video captured by brother William (aka Pirate Guillermo). It’s a bit shaky because Will’s enthusiasm over entertaining his sister is just too much to contain!

And to close us out, a minute and a half of pure Stitch laughter.

We hope Emily’s laughter is infectious today. Despite the fear and worry in all our lives over so many concerns, we don’t want to miss out on the blessings God is giving us each new day. Take a moment, in honor of Emily, to share some laughter with your family or friends or a smile with a complete stranger! Let’s spread Emily’s cheer and show the world the joy Christ can put in each of our hearts no matter the challenges we face.

 

Emily’s friends & family Care-a-LOT!

The past two months have been incredibly difficult for the Love family as they adjust to the new normal Emily’s Leukemia has created. It has not been an easy road.

Aside from the physical hurt and emotional fear, the family has also been struggling with financial burdens resulting from Jason being laid off just before Emily’s diagnosis. Through the generosity of friends and family, the Love’s rent and bills for March and April were covered. But the road ahead remains shaky.

Despite their continuing personal struggles however, Jason Love decided he wanted to return the generosity and support they have received by helping other families struggling to adjust to the life changing reality of childhood illness. Joining forces with the Children’s Miracle Network, Jason has led a campaign in Emily’s name to raise money for children’s hospitals around the country that provide support and services to families like the Loves.

In just a few short weeks, supporters have helped Jason raise over $6,000 for the Children’s Miracle Network! The Styrsky Insurance Agency helped by matching donations, both to the Network and to the Love family, and in the days ahead we can do even more to share love and financial support with children and families around the country struggling like the Loves. It’s not too late to make a donation – no matter how big or small, every penny helps!

Another way you can help is by visiting the Big Spoon in Fair Oaks, CA on April 13th from 11am to 11pm. If you mention the Children’s Miracle Network, forty percent of your purchase will be donated to the Love Team’s Care-a-thon campaign!

On April 13th, the Loves will be partnered with the Styrsky Insurance Agency, Fox 40, radio station The WOLF 101.9, the Children’s Miracle Network, and other local families to reach the Care-a-thon goal of $100,000! If you are a part of a business that wants to help by matching the money Jason and Emily have raised, you can call in during the Care-a-thon and pledge your generous donation.

Daddy entertaining Emily in the hospital

The Love Family has already experienced a great deal of personal struggle and they have a long journey still ahead. But with God’s grace and the love of people like you, they have the strength to face every challenge. Help them share that love and support with other families by donating to the Care-a-thon this week!

Please praise God for the generous hearts that have and will support the Children’s Miracle Network through the Care-a-thon. Please also thank God for Jason’s heart of love – that in a time of personal struggle, he was moved to help others. 

Please pray for the Love family’s own financial struggles. While Emily’s medical care is fully covered, the family’s day-to-day needs continue to be a burden. Please pray for a job that would allow Jason to provide for his family, preferably while still allowing him the time he needs to be present throughout Emily’s care.