Category Archives: Medical Information

Down the Road …

Recently our local newspaper, the Sacramento Bee, published an article spotlighting the long-term side effects of cancer treatment.

Childhood Cancer Survivors

In the article, Emily’s own Nurse Practitioner from U.C. Davis, Kay Wells, discussed the risks pediatric cancer patients may face down the road.

When children are diagnosed with cancer, families fight so hard for them to make it; their lives are a gift. But the miraculous treatments that save childhood cancer patients can also, years after the fact, make them susceptible to secondary cancers and other health problems, a range of illnesses known as late effects. Now researchers are learning that those late effects can include not only the early development of the illnesses of old age but also the premature onset of frailty – the kind of physical weakness, exhaustion and low muscle mass seen more commonly in people of advanced age.

In fact, research shows that

80 percent of adults who beat cancer as kids have a chronic, perhaps life-threatening health condition by the time they reach age 45. More than half have heart abnormalities by that age. Another 65 percent have impaired lung function, and 48 percent have memory impairment.

Those are dismal words to read. But it’s not the first time we’ve heard them. When Emily was initially diagnosed, she was given a 90%-99% 5-year EFS prognosis. That dropped to 65%-80% after her CNS-2 (spinal fluid leukemia) was discovered and she didn’t respond to the Induction Phase as hoped. Relatively speaking, those are still good odds, especially when you factor into account all the prayer being poured out over Emily everyday. We are still expecting a 100% cure. But something that’s weighed on my mind ever since first hearing those statistics prompted me to ask Kay Wells about them earlier this year.

I asked, “What does 5-year EFS really mean?” EFS stands for Event-Free Survival. Tack on the “5-year” and what you’ve got is a 65%-80% chance that Emily will remain event-free (no death, relapse, or development of a secondary cancer) for 5 years. So the next question, “Well, what about after 5 years? What then?” Because I’ve looked at the statistics online, I’ve studied all the published journals and clinical trials and research I can find, and from what I can understand, the numbers don’t get better -they get worse.

Graph depicting overall survival of childhood ALL patients treated at St. Jude between 1962-2007

Graph depicting overall survival of childhood ALL patients treated at St. Jude between 1962-2007

Overall survival graph This graph shows the wonderful advancements in treatment, because you can see the vast improvement of cure-rate from 1962, when only 10% of patients lived beyond one year, to the present, when more than 90% of patients live five years. However, if you look at the top line, the thick black one, which showcases more recent patients (2000-2007), you’ll see that the overall survival rate, while better, still declines with time.

This is what was discouraging me earlier this year that I had to ask Kay about. She was very straightforward with me and said that yes, Emily will most likely face challenges down the road. However, we won’t know what they are until we get there, so there’s no use worrying now. She reminded me that we’re still trying to get Emily through treatment and to focus on that. She, and Emily’s team of doctors and nurses, are monitoring Emily closely to watch for any signs of problems -not just a relapse, but cognitive delays, growth delays, heart, lung, and liver problems, and so on. And they will continue monitoring her for the rest of her life.

Right now we have a little girl, a lovely, blessed, spirited little girl. We can snuggle her and tickle her and hug and kiss her. We can hear her laugh and sing and sass back. We are thankful for every single moment with her, and we cannot waste one second worrying about what the future may, or may not, bring. We will just keep praying. Praying she will be free of leukemia and suffer no long-term side effects. Because I know our God is bigger than statistics.

Would you pray with us for Emily’s long-term health? 

I Go Home!!!

Sunday evening, after asking her momma when she would get to go home and Chrissie responding “I don’t know”, our little Stitch started singing “I will go home? I don’t know. I go HOME. I don’t know”; a song that she continued to sing throughout the week.

Today, after 7 days and 6 nights in the hospital, Emily’s Absolute Neutrophil Count (ANC) finally hit 300 and with no bacteria growth in the lab tests, Emily was discharged. When Chrissie exclaimed, “We’re going home”, Emily celebrated by listing everyone who she was happy to go home and see: Ethan, Adam, Sissy, William and Daddy. She was so excited!!!

From here, the plan is to catch Emily up on the treatment she missed last week. To do so, she must have an ANC of 500 before the Doctor will give the green light on chemo. Emily’s ANC can be unpredictable so she could start treatment tomorrow or maybe next week. Though the uncertainty makes it hard to plan appointments and childcare, the relief of having Emily and all the children back under one roof makes it all worthwhile. Each member of the Love family is snuggling in to their own beds tonight and for this, we humbly thank God!!

Delayed Intensification

Shoe Snatcher!

Last Friday marked the beginning of Emily’s Delayed Intensification stage – the final part of her Consolidation Phase and the last big push of drugs before she settles in for the two year-long Maintenance phase.

The schedule for this stage is a bit all over the place, meaning patience and flexibility are in high demand.

The first three weeks of the new stage require only one weekly visit to the infusion room for doses of Vincristine and Doxorubicin. She had a spinal tap on her first Friday visit and also began a weeklong round of steroids (a dose she will repeat after a one-week break). It has been several months since Emily was on steroids but we’ve all quickly been reacquainted with the little bear Stitch becomes with them in her system – constantly wanting to be held, always hungry but often unable to decide what she wants to eat, and sometimes very, very grumpy.

The positive to the steroid is it makes Emily a hungry hippo and her tiny frame could definitely use some fattening up!

Another positive in the first month’s schedule is that it only requires Emily to go to the hospital on Fridays, which leaves Momma Christina available to take the older four Love children to Classical Conversations each Tuesday! Emily was able to join the family on the first day of school last week – it was both her and Christina’s first time back at CC since before Emily was diagnosed! Homeschooling has been a challenge since Emily’s diagnosis, but with the help of friends and family, and four very bright and patient children, it has continued to be possible.

Emily & Cousin Ezra have school together!

October 2nd should begin the second month of the Delayed Intensification stage, so long as Emily’s blood counts and ANC remain good. The second month begins with two weeks of near-daily trips to the infusion room for 8 doses of Ara-C, 2 spinal taps, an oral medication, and the introduction of a new chemotherapy drug. Emily will finish out the month with 2 doses of Vincristine, one each week, and then she will be done with Consolidation!

The Maintenance phase which follows will include intravenous and intrathecal therapy approximately every 4 to 8 weeks, based on Emily’s level of risk, as well as occasional rounds of the steroid. This should go on for two years – taking Emily’s treatment into the fall of 2014. It seems such a long way away, but the goal is a 100% cure and we can certainly wait and pray another two years for that!

Emily has had some fun adventures, happy family outings, and good rest over the past few weeks. She has even begun regrowing her hair (though she may lose it again with the current treatment)! While the side effects of her new round of chemotherapy have already begun to settle in, it all somehow seems more manageable with an ending point a little closer on the horizon.

Continued prayers are needed for Emily as she manages the discomfort and pain caused by her drugs and also for Christina and Jason as they balance work, school, and caring for Emily. Sometimes a little family time…and couple time…is the most important thing in the world! 

Jason & his little girl

Join us in Praising the Lord for Jason recently being asked to join the Board of the local Children’s Miracle Network! Jason has been speaking at local fundraising events, sharing his and Emily’s story, and helping support the U.C. Davis Children’s Hospital that provides her care. The Children’s Miracle Network is blessed to have gained Jason’s compassionate spirit and personal experience as they continue to help children around the country. 

ooOoo

In other news, it is time for your local blogger (aka Elisabeth/Auntie Plum) to say farewell. The Lord has blessed me with an opportunity to serve overseas as a Peace Corps Volunteer and I will be saying goodbye to my family and friends this coming Monday, September 10th. I will be moving to Rwanda, where I will serve for 2 years, 3 months as an English Teacher in a rural village.

God has put the passion to serve on my heart and I know that this is all in His plans. Indeed, the timing has been purely Christ. Had I received my Invitation a few months ago, after Emily was first diagnosed, I am certain I wouldn’t have been able to go. While Emily still has a battle ahead, I know that she is in the best hands and I can leave with a heart of joy, knowing she is loved and cherished.

As I will likely be receiving family news days (if not weeks) delayed, I am passing the baton to other family members to continue to keep this blog updated and all of Emily’s supporters in the know! Over the coming months, Aunt Gaby, Aunt Danielle, Grammie (Genie), and Momma Christina will be sharing the blogging duties. Give them love, as they put their hearts to ink, and continue to share with you Emily’s journey.

Grammie, Aunt Gaby, Aunt Danielle, Aunt Elisabeth, Momma Christina, Aunt Jennifer at Auntie Plum’s Going Away party

Goodbye Methotrexate!

Color with me!

Emily came home from her fourth and final round of high-dose Methotrexate today. Once again, she cleared the drug from her system in record time! The round of chemotherapy we were all the most worried about has turned out to be a bit of a breather.

In the midst of this 8-week interim Maintenance phase, we found out that Emily’s spinal fluid is clear of Leukemia cells and that she’s just a couple months away from her final [lengthy] treatment phase…and that ultimate goal: her treatment finish line!

In two weeks, Emily will begin her delayed intensification Maintenance phase – a two month treatment phase that will include three spinal taps and several weeks with nearly daily chemotherapy infusions. It will be a final intense push to eradicate the cancer from her blood before she sets in for two years of Maintenance to make sure the Leukemia never comes back.

Playing with her new Beads of Courage

Thank you for all of your prayers over these past two months. We have truly seen God answer those prayers by allowing the Methotrexate to eliminate cancer cells without causing Emily undue pain. After being so worried about the Methotrexate, we are thrilled to finally have it behind us. The Lord has truly walked Emily through this phase and we have no doubt He will continue to carry her through the last two phases of her treatment.

Rounding Third

Daddy & Lil’ Stitch

Emily is back in the hospital for her third round of high-dose Methatrexate. After her platelets and ANC were low on Monday, her normal Tuesday admittance was delayed to today.

With several family members out of town this week, most of the Love family packed a bag for this round of Chemo: Momma & Emily prepared for the hospital as the older Loves got ready for a trip down south to spend a fun weekend with Aunt Jennifer, Uncle Chris, and four of their cousins.

We’re all praying for yet another record clearance of the toxic drug from Emily’s body. She’s impressed everyone so far with how she’s handled this round, which had us all so worried at the outset. Even through the discomfort of side-effects, Emily is eating well, playing hard, and looking better than ever!

The Loves at the California State Fair

We are also beginning to see evidence that Emily’s own bone marrow is creating the healthy blood she needs. Instead of the regular trips to the infusion room for blood and platelet transfusions, Emily’s counts are finally rising all on their own!

Please pray that, once again, the “rescue” drug clears the Methatrexate quickly from Emily’s body this weekend. Pray for Christina and Emily as they endure another four days confined to a hospital room. Pray for Jason as he works and the kids as they enjoy time with their cousins. And praise the Lord for evidence of healing and the support of family and friends who continue to wrap their arms around the Love family! 

When you’re tired, even the floor-mat looks comfortable!

Stitch – 2: Methotrexate – 0

Emily did it again! In for her second round of high-dose Methotrexate, Emily cleared the toxic drug from her system in record time!

The Methotrexate is staying true to its long list of side-effects – causing painful mouth sores and burns on Emily’s bum – but thankfully it has not yet weakened her body to the point it cannot flush the drug out of her system as quickly as needed. Emily was released from the hospital at lunchtime Friday, just in time to join Momma at the rest of her Classical Conversations Conference.

The Conference brought some new logistical challenges to this hospital stay as Christina needed to be away from the hospital from 8am to 5pm both Thursday and Friday. With the help of family, the Child Life Team at the hospital, some fun toys, and Lassie, Emily did fairly well in her mother’s absence. It takes so much to replace one Mommy!

Meanwhile, Auntie Jennifer has been preparing for a demonstration of her own resilience. Jennifer signed up to run the Nike Half-marathon on behalf of the Leukemia & Lymphoma Society and in honor of Emily. For several months, she has been training daily as well as raising funds for research into a cure for the disease Emily is bravely fighting everyday.

We will share more about the marathon soon, as well as other friends who are also running in Emily’s honor, and some other fundraising being done by family to help fund a cure for cancer. In the meantime, though, we have a great opportunity to raise awareness of Emily’s brave fight to the L&LS and racing communities.

If we raise just $500 in Emily’s name within the next few days, “Emily Anne Love” will be printed on the racing jerseys of the Central Valley chapter of the Leukemia & Lymphoma Society throughout the fall racing season! That means every L&LS runner would bear the name of Stitch as they cross the finish line and help raise awareness and funds for critical research needed to get our Emily healthy again.

If you can help, every dollar will help get us to our goal, check out Jennifer’s fundraising page and click DONATE NOW on the right. Make sure to write FOR EMILY LOVE in the designated comment area to ensure your donation goes toward making Emily an Honoree Sponsor.

Thank you for your prayers and support this past week. We are thrilled Emily is continuing to handle the Methotrexate so well. Just two more doses to go!

Going in for her second dose

They grow up so fast!

Keeping with her schedule, Emily is returning to the hospital this morning to begin her second round of high-dose Methotrexate. The first round went remarkably well and we are praying for a repeat performance!

Over the past week, Emily has been able to get some good rest at home with her brothers and sisters and was even able to make a trip a few hours south to play with her cousins. Unfortunately, she also begun experiencing some of the side effects of the Methotrexate – mouth sores and burns on her bum.  Everything is being done to help alleviate these symptoms but they are causing pain and we pray they do not get any worse.

From everything we’ve been told, the Methotrexate will become more difficult to clear from Emily’s body on each subsequent dose. Her first dose cleared within 48 hours of the rescue drug being administered. It is generally expected to take around 72 hours – meaning at least a 4-day stay in the hospital. 

The family-planning crew has been in full gear helping to prepare for these mini-trips, arranging for someone to be at the hospital to help Christina with Emily and for sleepovers and childcare for the older Love children. Seeing all the people coming together to help the Loves is a huge reminder of the importance of family – whether biological, by friendship, through the Lord, or simply in love and spirit – the Loves are surrounded by a family of people dedicated to seeing Emily well and the family flourish during this time of heartache.

Thank you to everyone who has played a part in Emily’s journey, whether we know you or not. The doctors are striving to heal Emily’s body but it is all of you that the Lord is using to heal the hearts of every person around this sweet girl. 

Please pray for another fast passage of the Methotrexate from Emily’s body this week. Pray for soothing of the side-effects that cause her pain and discomfort. Pray for the logistics necessary this week to make sure every member of the Love family is able to be where they need to be and getting showered with love. Pray that all our hearts and minds are uplifted with joy this week as we find peace in the arms of God. And praise the Lord for each of you that are supporting Emily and the Love family 

At the head of the class!

Group Hug!

For once Emily did something better than expected! In just 48 hours, Emily cleared the first dose of Methotrexate from her body and was released from the hospital earlier this morning!

The drug Methotrexate is so toxic, that once administered by IV, it is immediately followed with a rescue drug, called Leucovorin (essentially folic acid). The Leucovorin helps rescue healthy cells by preventing the Methotrexate from bonding to them and, paired with fluids, flushes the toxic drug out of Emily’s body. The faster it is cleared from the body, the better! Our little Stitch did so well that Nurse Nicole said we could quote her in saying she’d “never seen a patient clear so quickly!”

Getting her nails done at the hospital salon!

After so many setbacks and side-effects, it was a relief this week to have something go really well for a change. There is still a long road ahead, as this is just the first of four doses of Methotrexate that Emily will receive and we are told that it will become harder and harder for her body to clear the drug each time. In addition, the side-effects of the toxic drug won’t really begin to show until sometime next week.

All tucked in to watch Lassie!

For now though, we are pleased to share that Emily got through this first hospitalization with flying colors. She was happy and upbeat in the hospital and even handled being confined in her room with remarkable fortitude! Thank you for all the prayers, encouragement, and support given to Emily and the Loves this past week!

Emily will be home with her family for at least a week and if her counts stay high, she could go in for the second dose of Methotrexate on July 10th. Until then, join us in praying that Emily’s GI tract will be spared the nasty side-effects of this chemotherapy drug and she will stay healthy and strong in the days ahead. 

High-dose Methotrexate

Tuesday marked the beginning of Emily’s interim Maintenance phase. While any progress brings a sense of relief as it moves us closer to the end of treatment, this particular phase of treatment is probably the most frightening we have faced thus far.

Over the next few months, Emily will receive a chemotherapy drug called Methotrexate. She receives a standard dose directly to her spinal fluid and a high dose through her Broviac (the High-dose is 250 times larger than the normal dose). High-dose Methotrexate is extremely poisonous and comes with a long list of risks and side-effects. The drug attacks fast-forming cells in the body and will compromise Emily’s mucus membranes along her GI tract.

High-dose Methotrexate is so toxic to the body that after the initial 24-hour push, a “rescue”, or antidote, is administered to immediately begin counteracting the effects of the drug and rescue normal cells. The rescue won’t make the drug completely non-toxic but without it, Emily’s entire body would be impacted and she would be extremely sick.

Momma, Emily, Auntie Elisabeth ready for a spinal tap

Due to the risks involved and the need for monitoring as the rescue attempts to flush the Methotrexate from Emily’s body, she will stay in the hospital for at least 4 days each time the drug is administered. In between each treatment, she will get at least one week off to rest. Emily is scheduled to receive four such treatments and if all goes well, she could be done in two months. However, she will have to make counts (platelets, ANC, etc) each time before beginning a new treatment and this could prolong the length of the phase.

One of our favorite nurses celebrated her last day before retirement with Emily!

As you can probably imagine, the next few months are going to be incredibly difficult for Emily and the entire Love family. With Emily and Christina spending so much time at the hospital, the older children are in greater need of childcare, love, and support. Aunt Gaby is managing a babysitting list and the meal train continues to help support the family as they are spread thin. Hospitalization also means a greater burden on finances as the family has to get to and from the hospital, pay for parking, and help provide food for Christina while she cares for Emily. A great deal of patience and flexibility is also mandatory to get through this phase as the schedule may be constantly changing and it will be difficult for the family to plan around these hospitalizations.

The greatest burden by far though will be facing the fear of the hardest chemotherapy yet. Monday night was full of anxiety as Emily’s parents prepared for the beginning of the first treatment, knowing they would soon have to trust the medical staff as they put poison into their young child. Only God can provide a peace to handle what lies ahead. On Facebook Tuesday morning, Jason reminded us of this, saying, “Lets remember that God is always with us, even in pain his love is there.”

Beginning her first round of high-dose Methotrexate, “the yellow chemo”

Please join us in praying for God’s peace, healing, and love over the entire Love family. Each of their hearts is burdened by the challenges that lie ahead and each could use a great big Hug from God through all of us. We know that Emily is in God’s more-than capable hands. Praise the Lord for the peace and comfort that comes through faith in Him!

 

Racing for a Miracle

After a week of sporadic fevers, we finally got some answers today as to why Emily has been so extremely fussy and unhappy.  Though none of the fevers have been over 101, Emily has been clingy, crying, and not eating all week and Christina reached a breaking point this morning, knowing that something just wasn’t right. She called the hospital and requested some cultures be done just in case something was going on.

Her intuition was correct and a visit to the Infusion room confirmed that Emily has an infection in her mouth. While not serious, the family was relieved to finally have answers, as well as something that could be treated. Emily received oral antibiotics that can be administered at home (Yay! No hospital admission!) as well as Tylenol with codeine to help manage her discomfort.

All of Emily’s siblings accompanied her to the hospital today for an exciting event hosted by the Children’s Miracle Network and stock car driver Marcos Ambros. Stanley Black & Decker, the Ace Hardware Foundation, and Richard Petty Motorsports have joined forces for “Race for a Miracle” a commitment to raise funds for children’s hospitals around the country. If Ambros wins his Sunday race in Sonoma, California, “Race for a Miracle” will donate $1 million on top of the funds they have already committed!

Adam gets a lesson

Though Emily missed some of the excitement while in the Infusion room, her brothers, sister, cousins, Aunt Marni, and Grammie all enjoyed a variety of activities in the hospital parking lot. They toured the giant rigs belonging to Ambros, watched a pit crew in action, and got lessons driving remote-control race cars from actual drivers!

U.C. Davis and the Children’s Miracle Network recognize the importance of making hospital stays a little less scary for patients and their families. Events like today’s are an important part of creating a positive environment and providing a break from the anxiety that serious illness creates. The staff at the U.C. Davis Children’s Hospital are so committed to the children in their care that ten nurses came in on their day off just to make sure there was enough support to get all the kids downstairs to see the race cars and drivers!

Andrew, Evan, Sophia, William, Ethan, and Adam

We are blessed that Emily is being treated at an excellent hospital with such a caring and compassionate team of providers. We also praise God today to have answers concerning Emily’s fevers and finally have a way to help bring her relief. In addition to not having to be admitted, we were thrilled to find out that Emily’s ANC has risen to 100 and her white blood cell counts have improved! We still don’t know what next week will bring but tonight the Love family gets to relax after an exciting and blessed day!

Signing a stockcar helmet