Tag Archives: Absolute Neutrophil Count

Current Treatment (AKA Long-Term Maintenance)

Well, we haven’t written any new posts in a while because there really hasn’t been a lot to say! Which is good! Since her last hospital stay at the end of February, Emily has been healthy and doing well. We saw her oncologist two weeks ago, and he was very pleased with her overall health. She has FINALLY gained 1 pound, which puts her at 23.6 lbs, just shy of the 24 lbs she was when diagnosed 13 months ago. She has also grown 1.5 inches taller over the past year, so while she is still quite tiny, she is growing, praise God!

Emily and her best friend, Kayla, who is ten weeks older.

Emily and her best friend, Kayla

Many people ask whether or not Emily is still in treatment and what her future looks like. She is in the Long-Term Maintenance term of her treatment, which will last until July 2014. This is what that looks like:
* every day she takes a chemo pill (6MP) at home
* once a week she takes a bolus of a second kind of chemo (Methotrexate), 4 pills at a time at home
* once a month she takes a round of steroids (Prednisone), twice a day for five days at home
* once a month she gets a third chemo (Vincristine) through her central line at the Cancer Center
* once a month she gets an antibiotic infusion (Pentamidine) through her central line at the Cancer Center
* Her maintenance treatment is counted in three-month cycles. During the first two months of every three-month cycle, so 8 times in a year, she gets a fourth chemo (Methotrexate) into her spinal fluid via a spinal tap.
* The Home Health Nurse also comes out once a month to draw labs, and if Emily’s IgG counts are low, she goes to the Cancer Center for an IVIG transfusion.

All in all, the current treatment has been very relaxing! Gone are the daily trips to the Cancer Center, gone are the twice-a-week visits by the Home Health Nurse, and gone is the constant worry about infection. We’re still very careful, of course, especially since we now know Emily’s antibodies don’t work at all even though her ANC is high, but we don’t feel as consumed by her treatment as we have.

Emily has been handling her treatment really well. The one week of the month when she receives her spinal tap, Vincristine, antibiotic, and steroid are her worst. She is tired, weak, grumpy, sometimes has full-blown roid rages, struggles with constipation, doesn’t sleep well, and doesn’t eat much (the steroids make her hungry, but the nausea and general malaise kill her appetite). We are learning to prepare for this week by stocking tempting foods, prophylactically giving Colace (a stool softener) and nausea meds, and trying not to plan too much out of the house. It’s a good week to sit at home and read :-)

I, personally, have struggled with my emotions and thoughts recently regarding Emily’s future -I may write about it soon -but there are many days when our family feels almost normal. The boys are all playing baseball again this year

baseball

The girls play together, brushing each other’s hair

brushing hair

and we’re able to focus on things other than cancer. It’s good.

Prayer Requests:
We have met many precious friends who are also undergoing medical treatments, and a couple of them need prayers. Amanda, 16 years old, beautiful, kind, loving, and brave, who I can’t write about without crying, is fighting recurrent progressive rhabdomyosarcoma. Her cancer came back and spread. Please, please pray for a miracle.
Olivia, who is the same age as Emily, is in kidney failure. She has a rare, genetic kidney disease that is currently in remission but is not curable. She will deal with it her whole life, and she needs prayers to have a whole life. Her twin sister also has the disease, but praise God she has not had the fight Olivia has had.
And please praise God with us for Emily’s health! We feel very lucky that she is responding to treatment. Also thank God with us for her team of doctors. They are simply amazing, and I am so grateful God chose them to care for Emily.

This is what love is —-

This is what love is —

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

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

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

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

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

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

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

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.

Back after a 2-week hiatus

Initially granted a one-week break due to her low ANC (absolute neutrophil count), Emily’s treatment was postponed for a second week when her ANC did not go up. After a two-week hiatus, her ANC has dramatically improved (up to 2,200) and we are beginning to see positive signs of her body recovering both from her chemotherapy and from the Leukemia in general.

During the break, we have focused on improving Emily’s food intake. Battling both nausea and diarrhea, Emily’s nutrition has been declining and in order to avoid the placement of a nasal feeding tube, the family has tried making mealtime fun for Emily. She seems most likely to eat when other people are eating with her and even better if she can eat off of your plate! Her interest in food is still going back and forth but so far, the doctors have not ordered the feeding tube and we hope it stays that way.

Standing tall with sister Sophia!

One of the initial indicators of Emily’s illness was her refusal to walk and her general malaise. We have seen Emily’s playful spirit steadily improving since her treatment began and the past two weeks have brought significant milestones in Emily’s mobility. She has gone from crawling, to standing with assistance, and finally to walking on her own for short distances! Check out the video below for a clip of Emily taking some of her first steps on her own in over four months!

Along with the return of her strength and spirit has come a great enthusiasm for playtime. Emily loves to swing in the front yard and to ride around the block in the family’s pedal car. At Ethan’s Little League playoff game this past weekend, she was goofy and silly in true Stitch fashion – cheering on her brother and playing pirates with William. Last weekend, Emily and sister Sophia celebrated Mother’s Day with the girls by going on a garden walk through Sacramento’s Fab 40’s neighborhood.

Emily loves Auntie Danielle

Mommas and their babies

A Mother’s Day Tea Party

Christina shows Emily & Sophia the flowers

The Mommas

Mother’s Day Garden Walk

Some of the recent pictures show another improvement in Emily’s condition – a decline in the puffiness around her face and body! Processing the chemotherapy is tough work for Emily’s liver and has caused a backup of fluids in her body. Shortly after her treatment began, Emily became swollen and puffy, most notably in her face, but we are finally seeing evidence that her liver is functioning properly again as our familiar little Stitch returns!

Pirate William and the Fair Maiden!

With her ANC back up, Emily will begin her next four-week round of treatment tomorrow. For the next two weeks, she will be at the infusion room four days a week for chemotherapy. Then two weeks of just one-day-a-week treatments. From there, the doctors will plan out the next phase depending on how her blood responds.

Sitting around with Cousin Joah

Please join us in praise for the improvements in Emily’s spirits, mobility, and physical well-being. Please keep praying for an increased appetite and an overall improvement in her blood work, as evidence that the treatment is working to fight the Leukemia in her body. 

There’s our playful Stitch!

A Week’s Vacation

Storytime with Auntie Jen

After Emily’s long stay in the hospital, her doctor decided a week’s vacation was in order! Well, it was also due to her extremely low ANC count, but it is well-earned nonetheless!

Emily kicked off her week without treatment with a visit from the Howell Family and she had a fun-filled Friday with aunts, cousins, and friends. Her spirits are always higher at home with family and her mobility has also been improving, as pictures of her off-roading will attest!

Stitch looks like a girl ready for a fun time!

Despite the improvements in Emily’s physical strength, her eating habits have been worsening. The concerns over her food and fluid intake persisted over the weekend and the specter of a nasal feeding tube loomed. However, Monday brought a call from Emily’s home-health nurse with news from her lead doctor.

Doctor Ducore was on vacation last week while Emily was in the hospital and not available for consult on the feeding tube issue. But on his return, he assured the nurse that the family had made the right decision in refusing the tube. There’s nothing to worry about, he said! As long as Emily continues to be active and her lab results show no signs of malnutrition, Doctor Ducore believes Emily is getting what her body needs.

Emily, Momma, and Auntie Jen

On the medical front, Emily’s labs show that her white blood cell count has risen (from 0.4 to 1.0). A positive sign that her body is beginning to produce healthy cells on its own! Her ANC also jumped over the weekend from a low of 60 to 720! Emily’s protein and albumin levels remain low, however the puffiness in her face (partially caused by low protein levels) has finally begun showing signs of diminishing. While still not entirely gone, we can finally see a bit of the Emily we knew before the Leukemia took hold.

Emily continues to struggle with pain and nausea, causing her sleep to be fitful and likely a major contributor to her lack of appetite. Please keep Emily’s physical body in your prayers. Pray that this week “off” will be rejuvenating in body and spirit so she can enter next week’s four-day treatment schedule at the top of her game. 

Dance Time with Christina and the cousins!

Emily is Home!

Ready to go home!

After a solid night’s sleep, Emily was talkative and playful Wednesday morning. She woke asking for “her boys” (aka her brothers) and spent the morning crawling about the room in angel wings with Mommie and Auntie Elisabeth.

Just before lunch, Kathie, the music therapist arrived armed with a variety of musical instruments and the quartet joined in song. Midway through “This Little Light of Mine”, Dr. Taylor arrived and was so impressed by Emily’s bright smile and joyful song that he declared she should get to go home and sing with her family!

While Emily’s ANC remains well below the normal discharge level (60 when it should be 500), her other important blood count levels have risen and she has remained fever-free. She also began eating food with greater gusto after nausea and pain medication helped her feel a little better. All in all, Emily’s spirits and body tend to do much better when she is with her family and surrounded by the comforts of home and we are so excited that she was able to return home yesterday afternoon.

Naptime with Auntie

Thank you to everyone for your prayers and support this past week! It is hard on the entire Love family when Emily has to be in the hospital and they are blessed to be surrounded by so many wonderful family and friends who help ease the burden.

Enjoy some more birthday pictures and a video from Emily’s last two days in the hospital!

Taking balloon-dog for a walk!

How many instruments can one Stitch play?

Emily loves visits from her siblings

Emily’s siblings made her cards & cake pops!

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!

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.