Hungry Hungry Hippo

It has been a week since our last post and while life always seems to be going full tilt for the Love family, all Emily has been doing is eating!

How many foods do you see?

Due in large part to the steroid Emily takes daily, little Stitch spends her day waffling between Dopey, Grumpy, and Hungry (the eighth dwarf!). Her favorite new activity is making mommy stand in front of the refrigerator and pull out item after item until Emily chooses which one she wants to eat. But she’s an indecisive little gal and often, by the time mommy has the selected food on a plate, has changed her mind to want something else!

Pasta time!

Snacking on the counter

We are thankful that Emily is eating, even if it does mean Christina spends a majority of her day as waitress. Weight-gain has been a concern throughout Emily’s treatment and her picky appetite means nutrition is also a concern. The past few weeks have shown a two-pound weight gain, and though we know some of this is water retention, we are glad to see the return of some toddler chubbiness!

All dressed up for dinner

The Induction extension is coming to an end this weekend. Emily will have her last day of the steroid on Sunday and will go in on Tuesday for another bone marrow biopsy. It will take a week for those results to inform us whether the additional intensive treatment has been successful in putting Emily into complete remission.

The past two weeks has been a tense time at home as the family absorbed the long term impact of the setback in Emily’s condition. It has been difficult for Jason and Christina to stay away from reading anything and everything they can on childhood Leukemia, treatment pathways, and lab results. Despite the excellent information provided by Emily’s medical team, there are always new questions keeping her parents awake back at home. Between worry, household tasks, and a restless Emily, Christina hasn’t had a good nights sleep in nearly two months!

Emily wearing her Stitch bracelet

Emily has faired better than her stressed parents. Though she has grown significantly less animated in the past two weeks, she has continued to be active and to share soft smiles and even a giggle or two with her family and friends. She has come to love the many hats she has received and sports her new Stitch-bracelet with pride. She even took a handful of steps this week with the assistance of Ethan and Sophia! Emily’s ANC has actually been steadily rising (4,400 this week!) and, though it is clear that she is uncomfortable, she is fighting this disease in true Stitch fashion.

Here is the video of Emily walking for the first time in over 6 weeks!

Please keep Emily and her family in your prayers this week!

• Pray that the new course of treatment will kill the requisite Leukemia cells to place Emily in complete remission. 
• Pray that Emily would continue to have the strength and energy to be active and relearn how to walk on her own.
• Pray for Christina and Jason as they manage their family and home together. That they be able to communicate with one another and keep their marriage strong.
• Pray that Christina would find a way to get regular sleep so she can stay healthy and emotionally well on the long road ahead. 

Waiting for the other shoe…

Monday’s news was a setback for all of us and the week since has been defined by waiting for the worst, which is not a cheerful state of mind for Emily’s family or friends. The reality, though, is that Emily has continued to be in relatively good spirits despite the introduction of an adult-level chemotherapy drug and going back on steroids. And we are very thankful.

Not only has Emily been more socially interactive in the past week, giggling and laughing at her siblings, but she has also begun to be slightly more mobile. Emily has started maneuvering into crawling positions and trying to lift herself up on the edges of tables or couches. She is wobbly on her legs and can’t fully support her weight without assistance, but it is comforting to see her feeling well enough to try.

Yesterday was Emily’s second day of chemotherapy in her extended Induction phase. It was a lesson in patience and the slow workings of hospitals for Momma Christina. The chemotherapy was begun nearly 2 hours after they arrived at the infusion room and then the doctor decided Emily would need not one, but two, blood transfusions to keep her blood counts up over the coming weekend. That addition meant another 3 to 4 hours, plus a half hour after the transfusion to watch for signs of a reaction to the new blood.

Standing up with Grandpa's help

Christina, who is the Director of the local Classical Conversations Charter program for homeschool families, had hoped to make it to Open House in the evening to support her children and to thank, in person, all the friends and families who have helped SO MUCH in the past 6 weeks. Unfortunately, the added time at the hospital meant Christina wouldn’t be able to keep her plans. Days like this are a regular occurrence in the “new normal” of the Love family. It is extremely difficult for them to make and keep plans when Emily could become ill, have a low ANC, be kept at the hospital, or simply not be up to going out or being away from Momma. Yet one more challenge to which the family is striving to adjust.

Emily was not feeling well after her long day hooked up to IVs. She slept a bit in the car and for a few hours back at home, but was otherwise mopey and indicating she was sick to her stomach. She perked up slightly when her siblings came home after their Open House but then settled in for a restless night in Mommy’s arms.

We continue to pray that Emily’s body responds favorably to the new treatment plan and that she feels well in the days ahead. Her blood pressure remains a concern, as does her mobility, though her ANC has gone up, rather than down as we expected, and that is good news. Thank you to everyone who has lifted Emily up in prayer this week and checked in to see how she is responding to the new treatments!

Children’s Miracle Network Care-a-thon

It has been six weeks since Emily first went to the U.C. Davis Medical Center and we  heard the word Leukemia.

Six weeks full of doctors, surgeries, needle sticks, and chemotherapy.

Six weeks full of meals, gifts, babysitting, and hugs.

Six weeks full of smiles and tears, love and support, and ever constant prayer.

The Love family has been surrounded these six weeks, not only by God’s arms of strength, but by friends, family, and complete strangers doing everything in their power to ease the difficult road Emily and her family are on. They have also been blessed with doctors, nurses, and specialists providing the highest level of medical care for our little Stitch.

In the midst of their own struggles, the Loves have seen and been touched by the many children they have met and heard of also struggling with serious illnesses and injuries. They may never be able to thank every person who has supported their own family, but they are motivated to give back and help others in a very special way that you can be a part of, as well.

The Loves have become Ambassadors for the Children’s Miracle Network – a charity committed to providing support and services to Warrior-children just like Emily. Over the next three weeks, Jason Love is leading a fundraising campaign as a part of the Network’s Race to 100k Care-a-thon. Along with several other Sacramento families, Jason has set a goal to raise as much as he can before April 12, 2012. On April 11, 12, and 13th, Jason will then go on local radio station WOLF 101.9 and Fox 40 News to ask businesses to match the donations he has raised in the weeks preceding. The money will all stay in the Sacramento area, supporting hospitals like the U.C. Davis Medical Center and other support services for families like the Loves.

You can help Jason meet his goal by donating directly to the Children’s Miracle Network via this link: Support Team Love. The Loves have received so much support through Emily’s illness, now you can help make it possible for other children to have the same support!

Thank you to family friend, Asher Styrsky, President of Styrsky Insurance Agency, who has committed to not only match the donations to the Children’s Miracle Network up to $2,500 but to also matching the funds specifically for the Love family! You can see his commitment here and be reminded, yet again, of the wonderful blessings God has provided for the Loves through the generous hearts of His children.

If you are part of a business that wants to help by matching the funds Jason raises in the next three weeks, please consider making a commitment to call-in during the Care-a-thon on April 11, 12, and 13th. You can pledge your support and get more details by emailing Jason at emily.stitch.love@gmail.com.

One Hundred Percent

One hundred percent healed by Prayer.

This has become a sort of motto for the family of Emily Love. Each new day brings more numbers to dissect and understand: blood counts, cure rates, vital signs, months and years of treatment… But the number we are trying to keep close to our hearts is just one: 100%.

Emily spent the morning with her Oncologist at U.C. Davis today and we received more numbers. But not the numbers we were hoping for. The bone morrow biopsy Emily had last week revealed that her first month of chemotherapy has not put her completely into remission. It was close, but not close enough. Emily will, beginning today, be back on an Induction treatment plan for two weeks. This means two more weeks of her steroid; four more doses of her chemo drug Vincristine; one more dose of Peg-asparaginase; and one new chemo drug, Daunorubicin.

Daunorubicin is what the Oncologist is calling a “kick-start drug”. Normally given only to adults, Emily is receiving a small dosage in hopes it will give her body the jolt it needs to stop the growth of the Leukemia cells in her body. The downside of this new drug is that it has increased side-effects, including loss of hair, nausea, and decreased blood counts. Emily has experienced all of these side-effects with her previous chemotherapy but we expect they will be worse in the days ahead.

Emily will be retested in two weeks to determine if the extended Induction treatment has done what is needed to place her in complete remission and gotten rid of her Minimum Residual Disease. Until then, we are praying that the pain, discomfort, and poor temper will not get the best of our Little Stitch.

So far, Emily has been part of a protocol study, or standard treatment plan, used across the country. This setback in her progress means she will be taken off the standard plan. Her Oncologist is now creating a new treatment protocol specifically geared for Emily. He isn’t making up something new, just adjusting the standard treatment to account for the fact Emily’s body needs a more aggressive plan. He says that though Emily isn’t quite where he had wanted her to be at this stage, she isn’t that far off. Ultimately, this delay won’t change what he is expecting, but it will mean the road will be bumpier ahead.

Emily is now considered High Risk, and her permanent cure rate has been lowered to 76%. This isn’t a huge drop, and is still a positive number. A number, we believe God can make 100% with your help.

Please pray for Emily this week. Pray that the physical side-effects of her new and increased chemotherapy will not be more than her little body can handle. Pray that the bright smiles we’ve seen in the past week won’t be completely dampened by her going back on the mood-altering steroid. Pray that her blood pressure, which has begun rising again, will be controlled by her blood pressure medication. And pray that she would begin to gain some much needed weight.

Please also pray for Christina, Jason, and the older Love children. Pray that God would wrap His arms around them in mercy and peace. Pray that they have strength and courage as they care for Emily and deal with the physical and emotional effects of her battle. Pray that they find comfort and encouragement in one another. And pray for the witness that they, and all of us, provide in how we support each other and trust in the Lord through difficult times. 

Below is a prayer card, created by Auntie Jennifer. Please feel free to save this image on your computer as a reminder to keep Emily in your thoughts and prayers. 

Further Diagnosis

Emily is always eating!

This week marks the end of Emily’s official Induction period. The first four weeks of treatment are supposed to provide the greatest reduction in Emily’s Leukemia cell count and indicate how extensive her treatment will be in the years to come. A meeting on Monday with Emily’s lead Oncologist and two surgeries on Tuesday gave the family a better sense of how Emily is doing and what lies ahead.

One of the remaining open questions from Emily’s original diagnosis was the level of Leukemia found in her spinal fluid. After extensive testing, the results came back as standard-risk Central Nervous System Leukemia (CNS 2). This means Emily’s Leukemia is a higher risk level and will require more extensive treatment to fully eradicate the Leukemia cells from her body. The doctor told the family this news is “not horrible”, but nonetheless, we all were praying for different results.

On Tuesday, Emily had another spinal tap and bone marrow biopsy. The fluids from these procedures will be tested to show how successful the treatment over the past month has been. If the tests reveal 5% or less of Leukemia cells, Emily will be considered in remission and her treatment will move on to the Consolidation Phase (a 6 to 9 month period of intense chemotherapy). If there is higher than 5% Leukemia cells, she will continue the Induction phase of treatment until complete remission is reached.

Being held by Grammie

One of the drugs Emily has taken daily during the Induction phase is a steroid that helps kill the Leukemia cells. Unfortunately, steroids are not nice drugs. They increase appetite and decrease mood stability. Emily is cranky and moody. She wants to eat constantly but changes her mind about what she wants quicker than the food can be taken off the shelf. She is not sleeping well and she continues to not walk. She occasionally lets other people hold her but prefers her mother, so Christina is very limited in her own ability to get rest or take care of things around the house.

Despite the increased appetite, Emily has not gained weight in the previous weeks. She is eating and nursing but the weight is still dropping off of her – leaving her arms and legs extremely thin and dropping her down a full diaper size. The doctors are watching her weight carefully, as this is not a normal result of the Induction phase. Emily has also had consistently high blood pressure readings that resulted in her being put on medication this past weekend. Since beginning the medication, her blood pressure has decreased but it will continue to be monitored carefully.

Emily stopped taking the steroid on Wednesday, at the end of her Induction phase. It is possible she will experience withdrawal symptoms going cold-turkey, including worsened moods and achey muscles. We are praying that going off the steroid will eventually result in a happier Emily – more cheerful, less achey, and not needing to eat all day long! We also hope that she will eventually feel well enough to begin walking once more. If she continues to stay off her feet, the doctors have said she may need rehabilitation to address this mobility challenge.

Emily will go in for another Oncology appointment next Monday to get the results of Tuesday’s surgeries and hear the plan for moving forward. That is when we will know whether Emily is in remission or will have to return to her Induction phase medications, including the steroid. Her diagnosis as CNS 2 lowers her permanent cure rate but we continue to believe in a 100% cure through prayer.

Family Movie Night!

Please pray for Emily this week as she recovers from two surgical procedures and deals with withdrawal from the steroid. 

Please pray for Christina and Jason as they care for Emily at home. Pray that they are able to get rest and take care of the daily needs of their family as they struggle with finances, scheduling, and educating their kids. 

Please pray that Emily’s tests show a complete remission allowing Emily to move forward to the next phase of her treatment. 

Beads of Courage

In 2004, a pediatric oncology nurse, named Jean Baruch, was looking for a way to help children deal with the emotional effects of serious and life-threatening illnesses. She developed a program called Beads of Courage. Begun in Arizona, the program now supports over 10,000 children in 60 hospitals around the world.

The mission of the Beads of Courage program is to use art as a way for children to track and celebrate their journey through illness and to provide a reminder to the child of what they have already overcome when facing a difficult procedure.

For every step of a child’s medical journey, from an x-ray to a radiation treatment, they receive a color-coded bead to add to their string. Children often amass 10 to 35 feet of beads! And through their strand of beads, they can tell the story of their courage on the road to recovery.

The Child Life Specialist at U.C. Davis introduced Emily to the Beads of Courage program and over the past four weeks, Emily has begun collecting her own strand of beads, representing every blood draw, surgery, and night in the hospital (seen below).

Emily’s strand begins with her nickname: Stitch. Christina felt this name was important to use because it is Emily’s feisty attitude that the doctors have continually commented will be one of her greatest assets on the difficult road ahead. The bulk of her strand is comprised of small beads representing her treatment: white for chemotherapy, black for any needle pokes, red for blood transfusions, green for fevers or neutropenia, yellow for a night in the hospital, and so on.

She also has a few special beads. The large black bumpy bead (right after her name) represents her mobility challenge. Emily’s refusal to walk was one of the first indications that something was not right. After more than a month off her feet, it is likely Emily will have to re-learn how to walk at some point in the future when her strength and spirit recover. The blue star represents surgery for her bone marrow biopsy. The music note was given to her for participating in music therapy at the hospital. The rainbow bead is given for Care Team Visits with the Child Life Specialist. The silver bumpy bead represents a medication challenge – in this case, given after Mom and Aunt Elisabeth were unable to get Emily to take medications the first time she was released home.

The silver duck bead is called the Wingman bead. Sponsored by the insurance company, Aflac, this bead was given to Emily with special purpose by her Child Life Specialist who has been impressed by the incredible support Emily has from family and friends. The note explaining the bead says this:

Wingman is someone who flies beside you. It is someone who protects you. It’s someone who watches your back when you feel as if you are flying solo. I want you to know that you are not alone, and that you’ve got me as your Wingman. That is what this bead means. Keep the Wingman Bead close, and know that your own strength runs very, very deep.

After the Wingman bead, comes a large blue & green glass bead that holds a very special significance for the family. This bead was given as a part of a program in which individuals wear the beads during marathons and races before donating them to the children as symbols of the strength and endurance needed to fight serious illness.

Emily’s glass bead was worn by a man in Oklahoma, a cancer survivor himself, who ran a race called the Warrior Dash. The Warrior Dash is a crazy 3-mile run that includes hurdles, obstacles, and physical challenges that would frighten the toughest Marine! Runners climb vertical walls, crawl through mud pits, and leap over fire! Emily’s bead wearer chose this event because it was the hardest event he had heard of and therefore the best way to honor the courage she’s shown in her battle.

Enclosed with his bead were pictures of him before and after the race wearing the bead, his medal, and a note that said, “I hope someday in the future, at another Warrior Dash Race, you will be running with me, a fellow cancer survivor. Until then, I am giving you the medal I won, for YOU are the real “Warrior”.”

The honor this man gave, not just by wearing a bead, but by his thoughtfulness and encouragement to a child he’s never met, are incredibly uplifting. And part of what makes this story even more incredible and personal, is that Emily’s Grammie Genie and Aunt Gaby ran the very same event in Holister, CA this past fall. Just a month apart, and across the country, three Warriors made brave journeys that now stand as incredible symbols of the courage and strength of Emily Love as she becomes a real life “Warrior”.

Emily’s strand of beads has already grown beyond what’s seen in the picture above. Every day, she undergoes medical milestones that will be recorded with beads to symbolize the immense courage she shows in the face of her pain and discomfort. In the months ahead, Emily’s beads will be reminders that she can overcome any test or procedure because she has already survived so much. And someday, years in the future, Emily will have this strand of beads as a tool to tell the story of her courage in her fight against Leukemia.

Target & french fries, What more could a sick child want?

Sometimes all you need is home. And sometimes you need a little more than that, but home still helps!

Emily has now been home with her family for five days! She is still feeling unwell, not sleeping through the night, needing to be held constantly, not walking, and eating very little. But her spirits are up and that brings smiles to all of our faces!

Snuggling with Big Sister

Emily was sent home with an ANC (Absolute Neutrophil Count) of only 20. This essentially meant she had no immune system. Family has been on edge about germs in the house and any exposure when they leave the house. Any one who feels even slightly sick has stayed away and Christina and Emily have remained close to home – only venturing out for short walks around the neighborhood for some fresh air.

Today brought good news from the Home Health Nurse who performs regular blood work. Emily’s ANC is now 869! Safely above the minimum count of 500, Christina took Emily for her first adventure – a trip to Target with her boys! Emily was so excited she even asked to sit in the cart for a few minutes (after it had been sanitized). Her energy waned quickly, however, and her interest turned to french fries (no clue where that one came from!).

Emily's first outing...to Target!

Due to the daily steroids Emily is taking, and the effects of her chemotherapy, Emily’s appetite is out of sorts and her weight has been declining quickly. The Doctors have told the family Emily can eat pretty much anything she wants (aside from certain raw foods and live cultures). This special diet includes all the fattening foods we can get Emily to consume…so french fries are a definite YES!

All the Love children are happy to have their sister and mom back in the house.  Emily’s induction period will come to an end next Tuesday and she will enter the protracted period of her treatment. We are still awaiting final results on Emily’s spinal tap tests, which will determine the extent of the next phase of treatment but we continue to pray she will be classified as low-risk and able to continue remaining at home with her family.

Please continue to pray for Emily and the Love family. It has been just four short weeks since her initial diagnosis and life has been in chaos for them all. Despite an optimistic prognosis, Emily is still a very sick young girl and it is hard for us all to see her unhappy and in pain. She has begun losing her hair, as well as dropping weight, and these physical signs of her illness are heartbreaking for us all. Please pray for peace and rest for Christina and Jason, understanding for Emily’s brothers & sisters, healing for little Emily, and courage and compassion for us all. 

A Second Attempt at Going Home

Late last night, Emily was discharged from U.C. Davis after her final dose of antibiotics. She remains neutropenic (extremely weak immune system), but the doctors believe she will recover better in the comfort of her home.

In the last few hours, the nurses carefully monitored Emily’s vital signs and temperature to ensure it would be safe for her to return home. Her blood pressure, which has been high throughout the past week, finally returned to a normal level. However, her temperature has been hovering around 99-100 degrees. If once at home Emily registers three or more fevers of 100.4 or higher, or one fever over 101, she would immediately have to return to the E.R. For this reason, we prayed any fevers would present before her discharge rather than back at home so we could avoid another quick turnaround and re-admittance.

Emily has been stuck in her isolated room for eleven days. She was only allowed out of the room twice when kind nurses helped stage jail-breaks! The volunteers on the floor have been great in bringing Emily toys and arranging for craft and music time just for Emily and mom. On Monday of this past week, Emily’s siblings were able to come and enjoy a hospital-sponsored pancake breakfast. It was the only visit the older Love children were able to make and everyone had a great time! Emily has continued to enjoy the amazing gifts of dolls, stuffed animals, cards, and pictures that bring a smile to her face. She also greatly enjoyed little microwave pizzas brought by Auntie Gaby and for several days has refused to eat anything but the cheesy pizza!

IHOP Children's Miracle Network pancake breakfast

On Emily’s last day, her demeanor took a turn for the worse.  She spent the day in a languor preferring to lie in bed watching her favorite Piglet movie and occasionally throwing raging fits that literally scared one nurse out of the room! She looks a bit grumpy in pictures taken just before she left the hospital, but she was glad to be going home. As Christina prepared Emily for the trip home, Emily said, “okay” to everything Christina asked – even taking her last oral medication. She would do anything if it meant she could feel fresh air again!

A little grumpy but glad to be going home!

The Love children woke to the surprise of Momma and Emmie back at home today. They enjoyed snuggle time before going to spend the day with friends. Christina and Emily spent a little time sitting in the front yard to get some much needed sunshine before getting their first visit from the Home Health Nurse who will come twice a week to check Emily’s vitals and draw blood before each chemotherapy treatment. The good news from todays labs is that Emily’s ANC is 196, the highest it has been since she was admitted over a week ago and up from zero yesterday! It is still too low for Emily to have visitors or leave home, but we are thankful that she seems to be doing well in her first 24 hours out of the hospital!

Please pray that Emily’s Absolute Neutrophil Count (ANC) continues to rise steadily so she can enjoy a slightly more normal life at home. Please pray that she stays well, with no fevers anytime soon. And please pray for Christina and Jason as they readjust to a life at home with all five kids, Little League practice, homeschooling, and now a very sick little girl.

 Please praise God for this second return home and that the Loves are all back together again!