Tag Archives: Prayer Requests

One Year Out

Playing dress-up

Playing dress-up

Last week we passed the one year anniversary of the end of Emily’s treatment. Without a hiccup, praise the Lord. The past year has been one of amazing growth for Emily. She has completely caught up to the average height and weight for her age group, her cognitive development seems perfectly on track, and she’s still a little spit-fire. Turning into a bigger and bigger one¬†everyday. She seriously cracks us all up on an hourly basis. Right now, as I’m sitting at my desk typing, she’s dressed in her “dance” outfit (a leotard and tutu and socks), singing to herself (as loud as she can, so it’s not actually to herself -the more people who hear her the better, in her opinion) while building a train track in the living room. She just came up and informed me that it is high time she begin dance classes, as she’s been waiting FOREVER. In fact, now that she’s five, FIVE, she should be going to dance classes, American Heritage Girls, and the hospital on a regular basis. Why she threw in the hospital, I don’t know, since her visits there aren’t as much fun as they used to be, but I suppose when you’ve lived your entire remembered life in the hospital, it might be a bit hard to let go. So I’ve got American Heritage Girls covered -she begins in the Fall, and she does still go to the hospital on a monthly basis, so I guess it’s time to begin looking for dance classes. Though, to be honest, I’m not sure a dance class could handle her ūüėÄ

So a health update: Emily’s been seeing her oncologist once a month for the past year, getting a physical and having labs drawn. Her CBCs (complete blood count) have been great every month! Platelets, White Blood Cells, and Hemoglobin are all exactly where they should be. She hasn’t shown any signs of pain in her legs or hips, and she’s walking completely normal again (no flat feet from neuropathy). She hasn’t even been sick this year! Since she passed her one year anniversary, we get to start spacing our visits to once every two months – and I’m actually okay with that. At one time I couldn’t imagine going a whole week, much less two months, without knowing her numbers -but she’s doing so great, and it’s really nice to not think about it all the time.

The only thing we’re still watching closely is her immunoglobin levels. Ideally her body would be producing enough of these to keep her immune system healthy, and her number would be in the 500-1500 range. Unfortunately her monthly number usually falls between 350-480. All this means is that she’s still receiving monthly IgG infusions, which she actually loves, because it means she gets to go back to the Infusion Room to see her nurses and watch a movie¬†(Now that she’s out of active treatment, she sees her oncologist and gets labs drawn in the adult lab, so no fun treatment or movies).

Next month we’ll have her heart checked to see if it’s been damaged by the chemo. That’s a bit scary. But honestly, it’s not something we can worry about. She’s in God’s hands, and I’m sure her heart is healthy and strong. But prayers would be appreciated.

2015-05-21 18.53.26

Throwing out the first pitch at a RiverCats game

just posing for the camera

just posing for the camera

Receiving her IgG infusion

Receiving her IgG infusion

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Feeding her newest cousin, Baby Jay


Sick … but no hospital stay!

Two sweet, sick little girls

Two sweet, sick little girls

This is what the girls looked like most of this week. After a super fun Christmas and a 6th Birthday Party for Sophia on Saturday, Sophia came down with a stomach bug Monday night. A healthy Emily helped ring in the New Year Tuesday night, but then she woke up about 3 am with the same bug. And they spent the next few days on my bed, on the couch, and in the bathroom. At one point, after I took Sophie to the bathroom then went to clean up her bed, she attempted to make it back to bed on her own. She didn’t get very far.


Sophia has slowly begun recovering, and today (Saturday), she felt well enough to sit at the computer and play a game for a few minutes. Hopefully Emily will be just a day behind and will feel better within the next day or two. Today she is still on the couch, watching Netflix and sleeping.

The wonderful news about this illness, is that Emily has not had to go to the hospital! I called in Thursday, just to make sure we were okay keeping her at home and on her meds, and we were given the okay. She ran a low temp on and off for a few days, but nothing that ever reached the 101.4 marker, and I’ve been working really hard at keeping her hydrated. So another milestone has been reached: an illness without a hospital admission! Score one for us ūüôā

It crossed my mind more than once to post earlier this week and ask for prayers, but I spent the week on the bed and couch with the girls, so this is my first chance at the computer. I know many of you pray for her continually anyway, and I appreciate those prayers!

Though it seems she is beginning to feel a bit better, I would definitely appreciate prayers for her weight and overall health. She has lost two and-a-half pounds already this week, and while that doesn’t seem like much, it’s almost 10% of her body weight. To put that into perspective, it took us an entire year to get her to gain three pounds. Optimistically though, she is healthier than she was last year, so hopefully putting on weight will be easier.

A bit underweight at the moment

A bit underweight at the moment

Miraculously, all three boys have remained healthy!

Oh! You may notice, looking at the above picture, that Emily’s hair is short again. I mentioned a while back that she was losing hair in the back. It just kept slowly falling out, so we finally cut off the side locks -there really wasn’t much there at all -and she’s growing it all back out again. She was a little sad to lose her curls, but we convinced her she looks like an adorable pixie, and she’s happy with that ūüôā And we’re all happy not having hair everywhere.

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 ‚Äď 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?¬†

The Port So Far …

The girls after Emily's first bath

The girls after Emily’s first bath

So Emily has had her new port accessed twice now, once at the Cancer Center two weeks ago and then again today, at home. And neither she nor I are sure of what we think so far.

The first access went really well. We put on the numbing cream and waited 30 minutes while it worked its magic, then Rachel, our wonderful Child Life Specialist, distracted Emily with bubbles while the nurse pushed the needle in. Supposedly pushing the needle in is somewhat like pushing a thumbtack into a cork board. With the numbing cream, Emily shouldn’t have felt the needle prick, but she definitely felt the pressure of the push and cried a bit. I’m sure this is a feeling she’ll get used to though. We had a long schedule that day -spinal tap w/intrathecal chemo, IV chemo, and IV antibiotic, so the needle had to be secured into place with gauze and tape. Besides being very protective of the getup, Emily didn’t seem to mind it. At the end of the almost 8 hour day though, she was Not. Happy. to have the tape removed in order to be de-accessed. It took myself, the Child Life Specialist, and two nurses to hold her arms and legs down and keep her body stretched out enough to remove the whole thing. It took forever because the nurse couldn’t just pull the tape off, or the needle would have been yanked out with it, plus Emily was fighting the whole time. It was awful. By the end, I was almost crying with Emily, and the Child Life Specialist had to give me a hug. The whole drive home I berated myself for not realizing this would be a part of having a Port. Emily HATES having the tape removed -it’s the same kind she wore over her Broviac, and we had to remove it twice a week to change her dressing. My consolation though, is she should only need the tape once or twice a month, so we won’t be taking it off twice a week anymore. And I’m sure she’ll get used to it like she got used to the Broviac dressing changes.

Today our Home Health Nurse came out to draw labs, so Emily’s port was accessed a second time. I rubbed the cream on and taped it up about 45 minutes before Anne arrived, and Emily instantly started cringing into herself saying, “I can’t do this. I can’t do this.” Oh my gosh. I cuddled her in my lap and we talked about how brave she is and how lovely it is to be able to take baths (every day!), and how it’s a little scary, but it doesn’t really hurt. When Anne took the tape off, I had to hold Emily down. And then Anne had to clean the skin and insert the needle. Emily cried and cried. But there was no need to tape the needle down, and the blood drew quickly, so Anne finished, de-accessed the port, and put a band-aid on. And after just a bit, Emily was okay again. She looked in my eyes and said it didn’t hurt but it “was very scary.” Then she hopped off my lap and went outside to play!

She really is very, very brave, and such a fighter! Every day I thank God for giving her such a feisty, spunky spirit. But she could use extra prayers over the next month or so, as she gets used to the new procedure. Please pray that she really won’t experience pain and that the accesses and de-accesses will get less and less scary. And really, a little bit of nerves over a lab draw are nothing when compared to what she went through last year!!

The truly lovely thing about having a Port instead of a Broviac, is that Emily can take a bath anytime she wants. And she wants one every day! She and Sophia regularly hop in the “ocean” with their dolls and animals and play for an hour or more. Who needs a pool?

First bath in 19 months!

First bath in 19 months!

The video I’m leaving you with is of Emily getting ready for church last week. She’s enjoying having hair again.

We’re putting in a Port

After extensive research, prayer, and talking with doctors/nurses and other families, we’ve decided to go with the Portecath central line instead of a Broviac. Everyone seems to agree that this is a wonderful option for Emily, and she is very excited. Presented with the two choices, she decided that she wants to be able to take baths and go swimming, and she is “going to be very brave,” when she has to get poked each time she’s accessed.She proved this last Friday when we went to the Infusion Room for her IgG transfusion. She had to have an IV put in her hand, and she did so great!! Just a little bit of crying with the needle poke, then she was fine. She didn’t even move her hand. Her nurses were so impressed, and when she was done they presented her with a reward they had purchased the night before -a sparkly, glittery My Little Pony. Emily thought the poke was definitely worth it ūüėČ

Her surgery is scheduled for Thursday morning, and she’ll have her Port accessed for the first time when she receives her monthly spinal tap and chemos next Tuesday. Please keep her in your prayers during the next week, as she will have to be very, very brave.

Today we got to meet with her oncologist, Dr. Ducore, and I had the chance to ask him my burning question: Since the discovery of her Minimum Residual Disease (MRD) in March 2012 (which is one of the reasons she is being treated High Risk), have there been any further studies, trials, or outcomes showing that following the High Risk protocol has increased her chances of not relapsing, as hoped? He shared that unfortunately, because the importance of MRD has only just recently been discovered -within the last couple of years – the studies and trials testing how well kids with it respond to a High Risk treatment will still take another 5-10 years. Emily is ineligible for the trials, but she is one of the first patients, who presented with MRD, being treated with the more intensive High Risk protocol. So we won’t have any answers during her treatment. The good news, however, is that High Risk kids have a tendency to relapse earlier in their treatment, usually within two years of being diagnosed. If they don’t relapse in that time frame, they then fall into the Low-Standard Risk groups and have just as good of a chance of not relapsing as everyone else. Emily is 18 months into her treatment and doing well!! And, ultimately, as Auntie Plum wrote when we first learned of the MRD, we are trusting God for a 100% chance of not relapsing ūüôā

Update – Day 3 – Friday

– Today has been a rollercoaster. Before we went to bed last night, Emily’s blood pressure medication, Norepinephrine, had been decreased to as low as it could without being turned off and the hope was that her blood pressures would remain stable and we all could merrily be transferred to the regular Peds floor today and not have to deal with gowns and gloves and multiple monitoring lines anymore. Of course, that didn’t happen. Her BP’s slipped as low as 60/30 during the night and so the medication dose was increased a notch. Then decreased again as her pressures returned to normal. Then increased again – twice – as her pressures fell again, once as low as 60/20. Hence, the rollercoaster. She has to have enough pressure/force in her circulatory system to be able to push the blood to all of her organs, to keep them healthy. Problem is, when your body is fighting an invasion by a bacteria, sometimes your blood vessels get weak and/or leaky and they just don’t work like they should. They will, they just aren’t yet.

A very very cold child - and a very worried Momma.

A very very cold child – and a very worried Momma.

– Emily has had two more episodes of temperature spikes. One started at 4 am this morning with intense shivering, a heart rate into the 190’s, and after about an hour, the temp started and went up to 101.4. She was then given Tylenol. Chrissie and I are pretty sure Emily’s temp increased some more but it wasn’t actually taken again until after the Tylenol had kicked in. Emily was more sleepy than usual after that but otherwise okay. About 11 am, the same scenario occurred again – intense shivering – so intense that Emily hurt all over, her lips were a little blue, and she was just curled under the blankets in a little ball of legs and arms. Her heart rate this time got up to 215. Surprise, surprise – her blood pressures were pretty good during all of this. The nurses gave her Tylenol but her temp continued to go up to 105.2, then finally decreased. After this second episode, which lasted two plus hours, Emily was her normal, smiley self. Can’t say the same for the rest of us.

– Chrissie’s doctor came in this afternoon to tell us that her blood cultures from this morning again showed gram negative rods, meaning that she still has the bacteria in her system. Her doctor said, which we had already surmised, that the continuing temps and blood pressure problems are because of that – her body is still trying to fight. Once the specific gram negative bacteria is isolated – and this could take several days, but should be soon – they will then be able to target it directly. Until then, Emily is getting a “cocktail” of three different antibiotics.

Please pray for Emily – that her body and the antibiotics can start to work together to clear out this bacteria. Also pray for her little emotions – they are ragged right now. Pray for Chrissie – as she was Very Very scared today. It’s pretty scary when you’re looking up the signs of septic shock online and your baby fits all of them. Pray for the doctors and nurses and their continuing wisdom. Pray for Emily’s brothers and sister, who are again making the daily trips from house to house. Pray for Jason, who is able to work from home – yea to his company(!) – for now. And pray for the friends and family who are again rallying to support Emily and her family. Thank you all – and good night!

Emily got her first food tonight - lemon sorbet ice cream!

Emily got her first food tonight – lemon sorbet ice cream!

A few weeks ago I asked for prayers for a young friend of ours, Amanda. It is with immense sadness that I am now asking you to pray for her family, as Amanda passed away Saturday night. Though Amanda was only 16 years old, her faith in Jesus was strong, and we have assurance that she is now in heaven with Him and is no longer in pain. But, while Amanda is now in comfort, her family is left here with broken hearts and indescribable grief. She has left behind her mother and father and one younger brother, as well as many extended family and friends. They will all need prayers as they experience the grief of her loss and struggle with the anger and confusion that will surely come.
Emily and I were blessed to know her for a short time, and she and her family will forever be dear to me. This journey we’re on is a bumpy one, with too many unexpected twists and turns. We live in a broken world full of sin and disease and death, and yes our God has victory over this, but here on earth it just really, really sucks sometimes.
Amanda began her cancer journey in January 2012, just one month before Emily, so by the time Emily made her first visit to the Cancer Center Infusion Room for outpatient chemo in March, Amanda and her family were already pros there. Emily and I showed up completely unprepared, not knowing how long we would be there or whether or not we could bring food, etc. And Emily had been on steroids for 5 weeks, so she was cranky and hungry all the time. To my embarrassment, as soon as we checked in, Emily began literally screaming for pizza. All the patients are in one large room together, so there was no hiding, and Emily made it loudly clear that she was not happy and she wanted pizza. About an hour into our visit, and Emily still screaming, a father came into the room and stopped at the bed of his beautiful young girl. He stayed just a little while, then left. A few minutes later, he came back and spoke to the nurses. Then one of the nurses came to me with a box in her hands. The father, Amanda’s dad, had heard Emily’s screams, understood the situation completely, and gone to Subway down the street to purchase her a mini pizza. I was so embarrassed and touched by the gesture that I didn’t even say thank you.
The Pinney Family is a special one. I hate that they had to travel this awful journey only to lose their little girl. Please keep them in your prayers.
Thank you.
The Lord is close to the brokenhearted and saves those who are crushed in spirit.
~ Psalm 34:18

Amanda Pinney

Amanda Pinney

Tigger went thud —

Emily, at Adam's Little League game, sporting her new cast, signed by all of the nurses at the Cancer Center this morning!

Emily, at Adam’s Little League game, sporting her new cast, signed by all of the nurses at the Cancer Center this morning!

Emily has been feeling really good of late – you would never guess, most of the time, that she’s on daily chemo. ¬†She’s been a mini-Tigger on springs, bouncing and climbing and jumping – and it’s been awesome to watch her. ¬†Unfortunately, Tigger¬†sprung too much yesterday and she now has a cast on her leg.

As Chrissie and Emily were leaving the Infusion Room at the U.C. Davis Cancer Center yesterday, after an antibiotic infusion in preparation for her spinal tap today, Emily was jumping up-and-down on some foot-high, decorative concrete blocks that were outside. ¬†Chrissie was holding her hand so that Emily wasn’t putting her full weight on her legs when she jumped but when Emily jumped down onto the grass at the last block, she crumpled to the ground, crying. ¬†At first, Chrissie figured she’d probably just sprained her ankle, because who immediately thinks that their kid just broke their leg(?!), and so she took her home, iced it, and put her down for her nap; however, when Emily woke up, she wouldn’t put any weight on her leg. ¬†There was no swelling or bruising and Emily wasn’t crying but Chrissie was concerned and so we – Chrissie and Grammie – took her to an Urgent Care. The¬†doctor there advised us to take ¬†Emily to the U.C. Davis ER since it had a childrens’ hospital (the Urgent Care wasn’t affiliated with one) and Emily was already being treated there for leukemia. ¬†Unfortunately, we ended up there on one of their busiest nights.

Emily, on her way to the hospital, and enjoying the ride.  She kept saying she was glad to be going to "her hospital" and to see "my doctors."

Emily, on her way to the hospital, and enjoying the ride. She kept saying she was glad to be going to “my hospital” and to see “my doctors.”

Waiting in the Peds Waiting Room.  Emily went from giggling, silly punch-drunk from lack of sleep to intermittently lying down.

Waiting in the Peds Waiting Room. Emily went from giggling, silly punch-drunk from lack of sleep to intermittently lying down.

We got to U.C. Davis about 8:00 pm – and waited in their Pediatrics Waiting room for five hours(!), before finally being ushered into the Peds ER at 1:00 am. ¬†We were in the waiting room long enough for our group to bond with another family who had brought in their two-year-old, who had also fallen – and we were sharing snacks and cell phone videos and I figured pretty soon we’d be inviting each other over for dinners at home! ¬†All the while, Emily was really guarding her left lower leg – not crying but not moving it either.

We're now in the Pediatrics ER room and Emily is still clowning around and silly!  She has the most awesome spirit ---

We’re now in the Pediatrics ER room and Emily is still clowning around and silly! She has the most awesome spirit —

After we got into the ER room and Emily’s leg was checked, they gave her a dose of Tylenol so that they’d be able to straighten her leg for an xray. ¬†Pretty soon, between the Tylenol and the general lack of sleep, she slept through the rest of the ER visit. ¬†Too bad Momma and Grammie couldn’t do the same. Turned out she has a Buckle Fracture of the fibula and tibia – which is a version of a greenstick fracture, which is fairly common in kids. ¬†Their bones are soft so when they break, they break more like a green stick, which bends and doesn’t break all the way through, rather than a dry stick (like an adult’s bone), which snaps all the way across. ¬†Her tibia sort of splintered while her fibula did more of a buckle, where it bent several ways. ¬†Her Oncologist told Chrissie this morning that it most likely occurred because Emily’s bones are weaker due to all of the chemo and steroids.

This speaks for itself ---

This speaks for itself —

Emily slept through the whole casting process.

Emily slept through the whole casting process–

 --- and she continued to sleep afterwards.

— and she continued to sleep afterwards.

Chrissie and I walked out of the ER after 4 am and arrived at Chrissie’s house just before 5 am. Emily slept the whole way home and then nursed and went to bed. ¬†Chrissie got an hour-and-a-half of sleep before getting up, driving her kids to her sister-in-law’s, and then taking Emily back to the Med Center for her already-scheduled spinal tap and chemo infusion. ¬†After picking up her kids this afternoon, she managed another hour-and-a-half of sleep, then picked up Jason from his car pool, they all took Ethan to batting practice, then everyone went to Adam’s Little League game. ¬†Hopefully, they will all get some sleep tonight.

Going home ---

Going home —

Emily is handling it well, so far. ¬†She held court at Adam’s Little League game with her leg spread out straight while playing a game with the other kids. ¬†Chrissie will keep any pain covered for now with some prescribed pain medication but the cast itself will take away most of the pain. ¬†The Ortho doctor who put on the cast said that kids’ bones heal really quickly and that the fibula will straighten out as it heals. ¬†Emily will have the cast for a few weeks and will be followed by the Pediatric Fracture Clinic at U.C. Davis. ¬†Enough cannot be said for the care and the caring that U.C. Davis has given to Emily and for the Childrens’ Miracle Network which is supporting the Cancer Center and allowing Emily’s treatments and care to be financially covered. ¬†Please support them anytime you get the chance. ¬†Also, of course, continue to pray for this family —

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!

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.¬†


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