Monthly Archives: June 2012

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. 

Team Will

Early in Emily’s treatment, she had the honor of meeting a group of people committed to raising awareness and funding for research and resources for children with cancer. Team Will is a Sacramento-based organization that annually relays across the country – riding 24 hours a day in honor of the 24-hour-a-day fight children with cancer face.

This year, 16 riders and 8 crew members departed from San Francisco, California on June 24th. With at least one rider on the road at all times, they will cross 13 states before the journey ends on July 3rd in Boston, Massachusetts. Along the way, the cyclists will visit 18 hospitals and participate in 7 community rallies with the goal of raising $125,000 for child support services and childhood cancer research.

After meeting Emily this spring, members of Team Will are riding right now with Emily in their hearts. You can follow Team Will’s journey across America here as well as sponsor one of the riders.

Groups like Team Will not only bring critical funds to the cause of childhood cancer but often give the even more important gifts of support, hope, and encouragement to the children fighting every hour for a day they will be cancer free.

Thank you Team Will!

 

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

A bumpy road

Life with a sick little girl is never dull and rarely relaxing. The past week and a half has had some fun adventures for the Love family but also a lot of worry and has required a great deal of flexibility.

After a major reaction to her PEG-asparaginase, Emily’s doctors began a round of a new form of Asparaginase, called Erwinia. Unlike most of Emily’s chemotherapy drugs that are delivered by IV, the Erwinia is injected by a series of six shots over two weeks. She received her first shot on June 8th, and after she showed no allergic reaction, Emily and her family were able to enjoy a sun-filled weekend at the ocean in Monterey. They enjoyed waves and sand and a family bike ride along the shore. A much needed break for the entire Love clan!

Christina was hoping for another brief break from daily hospital trips the following Thursday but her hopes were dashed when the nurses called in the morning to report that Emily needed to come in for blood and platelet transfusions. It is hard on the entire family when Emily has daily trips to the hospital. It means less rest and less family time for everyone. But the burden is eased by the support of family and friends who regularly watch the older children and are available even last minute to step in and help.

The lack of an initial reaction to the Erwinia hinted that Emily’s allergy was to an E-coli carrier in the PEG-asparaginase rather than to the entire line of Asparaginase drugs. However, after her fourth injection on Friday morning, she developed a local skin reaction which was quickly treated with Benadryl. This reaction, though slight, is likely a precursor to a more severe reaction and so Emily will not receive the additional two doses of Erwinia for which she was scheduled and is now considered allergic to all forms of Asparaginase.

Though Emily showed no further signs of a reaction, she was clearly in pain throughout the weekend. Nausea continued to plague Emily and she was fussy and unhappy all through Father’s Day. Christina slept little through the past weekend, waking several nights to find Emily warm with fevers. None were high enough on their own to warrant a trip to the hospital and the fevers were usually gone by mid-morning but they added to a mother’s growing unease.

Dr. Ducore took note of all these symptoms during Emily’s medical appointment Monday morning but didn’t see the need for hospitalization. He said that much of her discomfort is part and parcel of receiving chemotherapy. Nonetheless, with her platelets at 30 and her ANC at zero, it is clear that Emily is not strong enough right now to move to the next phase of her treatment. With hopes to resume treatment next week, Christina and Emily returned home Monday morning looking forward at last to a few precious days away from the hospital.

At the Infusion Room

It is difficult to hear Emily fuss and repeatedly say “ow”. We all know that she is uncomfortable, even in pain. Her body is covered in bruises and she rarely eats any solid food. She has periods of high spirits in which we all get to laugh and play but in the back of all our minds, we know Emily is a very sick girl who is fighting so very hard to get healthy.

This effects no one more than Emily’s immediate family. Her siblings, who may not fully understand what is going on, definitely know that Emily is struggling. When Emily and Christina had to go to the hospital at the last minute this past Thursday, Adam taped shut the front door and made a sign indicating the hospital was in the back bedroom – his own quiet way of saying he is tired of his momma and sister having to go away so often.

Christina and Jason also struggle. Both wanting to be able to make their daughter feel better; to be able to hold her, comfort her, do whatever they need to do to fix what is wrong with her. But this is not something they can fix, not something that they can make go away. It takes a lot of courage and an enormous amount of faith to trust the Doctors to make the best decisions for Emily and ultimately to remember, every day, that Emily is wrapped in God’s loving arms.

None of us can understand why Emily has Leukemia. Why a child with so much life and spirit is struggling and suffering. But it is clear that God continues to watch over Emily and her family. He has surrounded them with family, friends, and strangers who provide meals and childcare; donate blood and platelets; offer financial support or the gift of a weekend away or a night out; who constantly are praying and lifting the family up to God; who give hugs just when they are needed most.

And God has also given Emily a team of doctors and nurses who dote on her and care as much as each of us about Emily’s health and survival. They watch over Emily diligently both in the hospital and out; are searching for the best treatment plans; offer smiles and laughter, gifts and hugs. They have decades of knowledge and expertise between them and they are committed to helping our Stitch beat this cancer for good.

Between her allergic reactions, her fevers, her mobility challenge, and her loss of appetite, Emily has certainly had her share of obstacles. Her path thus far has not been straight and narrow, it has been twisted and bumpy and will likely continue to be. But there is peace in our Lord, knowing that He is watching over us all and carrying Emily, and her family, in His arms. Whatever the future holds, it will be met with faith above all and with the strength and peace that only our God can provide.

A scare at the infusion room

Yesterday, Emily went in to the U.C. Davis Infusion room to receive a dose of PEG-asparaginase, one of the many chemotherapy drugs she has been receiving throughout her treatment. Moments into her infusion, Emily’s nurse noticed a flush in her cheeks and shortly after Emily began vomiting profusely, coupled with hives and puffiness in her eyes and lips.

PEG-asparaginase is a drug typically injected by shot into a muscle. Due to Emily’s age and the risk of allergic reaction to drugs in the Asparaginase line, Emily was to receive her dose by IV over a two-hour period. Thankfully, this infusion method and the quick thinking of her nurse team meant that Emily had only received 8 milliliters of the drug, most of which was quickly drawn back out of her system. She was then given Benadryl to respond to the allergic reaction and a steroid to help clear her airways.

The Benadryl helped Emily get some rest after the reaction but her doctors kept her at the Infusion room to be monitored. Chemotherapy is slow releasing and it was possible she would exhibit further reactions and need to be admitted to the hospital.

Thankfully, after getting some rest, the allergic reaction subsided. Her temperature remained high and some slight puffiness around her face persisted but by 6:30 last night, she was released to return home. She will remain on Benadryl for 24 hours and continue to be monitored at home for any further reactions.

We are so thankful that Emily is surrounded by a responsive and well-trained team of doctors and nurses who knew just what to do when the reaction occurred. It was frightening for Christina to watch her baby experience these symptoms but she was comforted in knowing that Emily was in good hands.

Emily will no longer be able to receive the PEG-asparaginase as her body has clearly developed antibodies against it. There are other versions of the Asparaginase that her doctor may switch her to, however they require an administration over several days (rather than just a few hours in one day). It is also possible this drug will simply be removed from her treatment plan. [**See updated note at end]

Emily is doing fine back at home and the entire family is thankful that she is safe. We will wait to hear how this reaction will affect her future treatment schedule and have still heard nothing further as to why Emily’s blood and platelet counts have been dropping so quickly in the past few weeks. She will likely have another platelet transfusion on Friday and if all goes well, the family is looking forward to a weekend trip to rest and relax.

Please pray that no further reactions develop over the next few days as a result of the chemotherapy allergy. Please pray for Emily’s siblings who so bravely heard the news and said they wished these things didn’t happen to Emily but they are glad that she is alright now.

And finally, please join us in praising God for the team of nurses and doctors who ensured Emily’s safety yesterday and take such good care every day to provide the best possible treatment. 

** Emily’s doctor called Wednesday night to say he has decided to replace the PEG-asparaginase with another form of Asparaginase, called Erwinia. If it arrives at the pharmacy in time, Emily will receive her first dose this Friday. The doctor believes Emily reacted to an Ecoli carrier in the PEG-asparaginase. If this is the case, she should not react to the Erwinia. If, however, Emily does react to the new drug, it will be clear she has developed antibodies against all forms of Asparaginase and they will be removed from her treatment plan entirely. Please pray that she does not have another allergic reaction to this new form of the drug!

Back in treatment

When Emily was originally diagnosed in early February, she had been showing signs of pain and discomfort for several weeks. So when her treatment began, it was hard for family to distinguish what discomfort was from the chemotherapy and what was simply an aspect of her Leukemia.

Now that the Leukemia has begun to recede, the two-week break allowed us to see a return of the energetic personality that earned Emily the nickname ‘Stitch’. When her treatment cycle began anew though, this improvement in Emily’s demeanor made it easier to see just how tough this medicine is on her little body. Within 24 hours of her return to treatment, Emily was clearly not feeling well, with nausea setting in and signs that she was struggling with pain and discomfort throughout her body. Her diarrhea also returned, though it is raising fewer concerns now that we know it is just one of many side-effects that will eventually pass.

Eating lunch with Auntie Jennifer

Of greater concern this past week has been an increasing need for blood and platelet transfusions as Emily’s blood counts are dropping quickly and her body is not maintianing adequate levels on its own. While transfusions will always be available to help Emily’s body keep up, there is an inherent risk in each transfusion given so the doctors prefer to keep them to a minimum. This past week alone, she received platelets twice and whole blood once and she will receive more of each on Monday.

Thus far, lab tests have not been conclusive as to why Emily’s counts are staying so low but we hope to hear more tomorrow. It could be a result of overworked liver and kidneys or it may just be another side-effect we have to hope improves in time.

Emily has two more weeks in this cycle of her Consolidation phase. She receives chemotherapy just once each week. The next phase of treatment is currently scheduled to begin on June 19th with the first of many 4-day hospital stays. However, with her low ANC and platelet counts there may be another break between cycles in order to allow Emily’s body a chance to recover before the next round begins.

Emily has always been a happy girl and continues to have plenty of smiles. Her strength also continues to improve and she is walking on her own more and more everyday. It is hard to watch Emily struggle with the physical impact of the chemotherapy but when she flashes you one of her big grins or throws her head back in laughter, she makes this journey a little easier for us all.

The Howell and Love children enjoyed a day of fun!

Please pray specifically this week for Emily’s blood and platelet levels. Pray that her body be able to make these important cells on its own and to maintain the levels she needs to stay healthy and strong. 

Please also pray for Emily’s family as they continue to watch over Emily and adjust their lives to the demands of an intensive treatment schedule. Pray for physical rest as well as emotional peace. Every day brings new worries and concerns that weigh heavy on Christina and Jason’s hearts. Pray that God would give them peace and courage in the days ahead.