Monthly Archives: September 2012

Back on the road —

Emily and Mommy and some pretty seashells. A temporary distraction from the side effects of the chemo.

Emily is now back on the road of her leukemia treatments.  When she was admitted to the hospital on Sept. 14th for fevers, the chemo that was due that day had to be postponed.  Her ANC/immune system count – see how many terms we all now know that we never knew before?! – rose to 500 or more after she returned home and so the missed chemo was given this past Tuesday, the 25th.  She got IV doxorubicin and vincristine and also restarted the steroid (for a week).  The steroid is never a welcome treatment, for even though steroids are given for a reason and are wonderful at what they do, Emily is never a happy steroid camper.  This time, however, the side effects of the chemo seem to be overriding the steroid side effects and Emily, at least this week, has been feeling limp and yucchy.  The doxorubicin has hit her this week and the vincristine, which has delayed side effects, should hit her next week.  Because of that, next week will be a week off of treatments.

In the meantime, life goes on, swirling around this busy family.

Please continue to pray for Chrissie – she’s a trooper, but this is wearing on her.

Grammie, Emily, and big brother, Ethan.

Also continue  to pray for the other children, all of whose lives now circle around Emily’s. Thankfully they seem to be handling this journey well, and they are all so strong. The boys are helpful with both girls, and little Sophia has matured a lot this year, taking her Big Sister role in stride.

Emily, Mommie, and Marissa Tingus.

This journey has had its uplifting and happy moments.  One of those was tonight when a fundraiser was held by one of Emily’s extended family, Marissa Tingus.  She is raising money for the Leukemia and Lymphoma Society so that she can run the Nike Half Marathon in San Francisco on Oct. 14th.  She held a raffle tonight and  it was heartwarming to see so many family and friends take a Saturday night to come and participate.  This journey would not be possible without those other people.  Chrissie and Jason and their kids are not on this journey alone – they have family – and extended family(!) – and friends – and people who don’t even know them aside from this blog – to help them, pray for them and walk with them —- and we love and thank all of you.  Below – I hope! (please remember that I am technologically challenged!) – – is a video that Jason put together for the fundraiser.

P.S.   If anyone wants to follow the adventures of Auntie Plum, the author of this blog – and experience again her wonderful way with words – go to http://www.detourscenery.wordpress.com.  She brings her Peace Corps adventure in Rwanda to life!

Come Help Kick Some Cancer Butt!!

This Saturday, a fundraiser is being held in honor of our little Stitch. The event coordinator is Marissa Tingus, part of the Love’s extended family. Marissa is one of three woman running the Nike half-marathon in Honor of Emily and all proceeds from this event will go to the Leukemia and Lymphoma Society.  To find out more information on the cause and where the funds will go, please visit: http://www.lls.org/

Whether you can attend or not, you can definitely participate! Tickets can be purchased at the door or by emailing Marissa at the1andonlystar at gmail dot com.  The tickets are $1 each and for every $20 in tickets purchased, you will get 5 free.   You do not need to be present to claim your prize!! If you don’t want raffle tickets but would still like to help, you can donate directly at http://pages.teamintraining.org/sf/nikesf12/mtingus.

You, our dear friends and family (yes, even if we’ve never met you)  have provided a wealth of  support the last few months through words of encouragement, delivery of meals, baby-sitting of the older children and through prayer, the most powerful gift of all. We hope to see you Saturday to share in the music and festivities and so that we may give you a hug, thanking you in person for all that you have done!!!

PLEASE COME HELP

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!!

Still on the Roller Coaster —

Emily and Chrissie – just chillin’ in the hospital!

The hope was that Emily would be able to go home today, Wednesday, but that is not to be.  Plans have been made by the doctors, then changed, then changed again!  That is just the way it is in the hospital, as her doctors get new lab results – and see how Emily is responding to her treatments.  Thank heavens they are there and are being so attentive to and trying so hard to get this little girl on the road to well.

Yesterday morning, her ANC was 110 – going up, but still quite low – and she was doing well, so they stopped the Vancomycin, the big-gun antibiotic, and kept her on the general antibiotic, “just in case.” The doctors also planned to give her the chemo that she had missed on Friday and start her on her next seven-day course of steroids.  Later in the day, however, Dr. Ducore, the Oncologist who is in charge of her care (and bless him for putting up with our Stitch, who does not follow the normal path for anything), decided not to start her on the chemo or the steroid until her ANC is at least 500.  That news was a huge relief to Chrissie because having a Stitch-on-steroids is not a pleasant thought when that Stitch is confined to a four-walled hospital room!

Snuggling with Daddy last night!

Today, Emily’s ANC is 120. The new plan is to keep her on the general antibiotic and keep her in the hospital until her ANC is greater than 300. She has been home before with an ANC less than that but the doctors are being extra careful because Emily continued to run temps after she was hospitalized.  Better to be safe.  We have been wondering why Emily was running such high temps when her labs have come back negative for a bacterial infection, but there seem to be no “for sure” answers.  One doctor said that with no immune system, sometimes your own body’s bacteria can cause a temp and that that those bacteria might not show up on a lab culture.  Someone else had a different explanation but, basically, it’s all a puzzle.

Emily was also started on Claritin today for possible allergies.  She has had a runny nose and a random cough for about a month.  The cough has gotten a little more frequent in the hospital so the doctors decided to go ahead and treat it as allergies in the hope that her symptoms will resolve.

Please pray that Emily’s ANC will rise to over 300 by tomorrow(!) so that she and Chrissie can go home – and continue to pray for all of Emily’s Support Army who are rearranging their lives to take care of the rest of the family during this continuing roller coaster ride.

 

THANK YOU!!!

We want to honor and say “Thank You” to the army of people who are helping Emily’s family in so many ways. We have been getting so many emails and notes from people saying that they are praying. And when Auntie Gaby, who is handling the babysitting portion of this process, sent out an email a few days ago asking for help through the end of this week, within twelve hours, she had every day covered – including one day where four people offered to watch the kids and she had to actually turn three people down! Emily’s family is so blessed by all of you – thank you!!!

This is how it is —

A sick, not-feeling-well toddler.

This is how it is in the life of a two-year-old fighting leukemia — On Friday, Sept. 14th, Emily was in the middle of her last two-month treatment protocol before entering the two-year Maintenance phase. Instead, she ran a temp of 101.8 and had an ANC of zero, meaning no immune system at all to fight infection.  She was admitted to the hospital – along with Chrissie, of course – labs were drawn, and she was started on a general antibiotic.  When labs are drawn, if they show a bacterial infection, further cultures are run to determine what bacteria has invaded her body and which specific antibiotics will kill it.  Early this morning, Emily spiked a temp of 102.2 with a fast heart rate and respiratory rate, which is not good considering that she’s been on an antibiotic for two days.  More labs were drawn and Vancomycin, a really powerful antibiotic, was started.  So far, the original labs have been negative for bacteria but the doctors say that some bacteria can take longer to show up.  Emily will now be in the hospital into Wednesday, enough time for the original cultures to come back and for the new labs to show results.  If all of the cultures are negative and Emily doesn’t run any more temps and her ANC starts to trend upwards, she MAY get to go home on Wednesday.  If the cultures are positive, she will be on Vancomycin for a total of ten days.  In the meantime, she is not feeling well and she is acting like she is feeling!

Lunch and a lot of distraction with her brothers and sister.

This is how it is for family and friends — When Emily was admitted on Friday, the other four children switched hands two or three times, then were home at night, once Jason got home from work.  Auntie Gaby and Uncle Jay took over yesterday afternoon and had them last night – Gaby took the kids to the hospital this afternoon and traded places with Chrissie – Chrissie took the kids home and had a chance to shower, regroup, and help the kids catch up on some missed schoolwork.  Once Jason got home, the plan was for Chrissie to return to the hospital to relieve Gaby – and the kids would be home tonight.  Rebecca, Jason’s Mom, will go to their house at 4:30 am tomorrow morning so that Jason can go to work.  She will watch the kids all day then Gaby will pick them up at night, after her work, and take them back to her and Jay’s house, where they will stay until Chrissie and Emily are set free from the hospital.  Other family and friends will be taking care of the kids and their school lessons during the days.  As you can see, it is quite the juggling match and it involves a lot of people for each of Emily’s hospitalizations.

Finally asleep, with Auntie Gaby. When the fier (Emily’s name for pacifiers) comes out, we know that Emily is out.

This is how it is for Chrissie — Right now, Emily’s Momma is going through a rough patch.She is feeling emotional, tired, and discouraged.  Being stuck in a hospital room with a sick, temperamental two-year-old on top of worrying about said little girl’s health is mind-numbing and can wear you down quickly.  She, like the rest of us, had figured that Emily was on the downhill portion of this journey and that other than her out-patient chemo treatments and maybe some random blood transfusions when her counts were low, this whole cancer journey would be getting easier.  We all got a big dose of reality this weekend – plus, this time is harder logistically.  When Emily was first diagnosed, Jason was out of work and more available to help with the other kids plus Auntie Elisabeth was home and able to shoulder a huge, huge chunk of the load.  This time, Jason has a job – which is a big praise to the Lord, but it makes him less available – and Auntie Elisabeth is in Africa – of all the far-away places – and Grammie is typing this from the middle of  Yellowstone National Park on a strange computer, unable to physically help Chrissie – and the kids’ home school is in full swing, or at least it was before this happened.  So, although Chrissie said she’s not giving up hope, that she knows that in the future, this will just seem like a blip in the journey of life, she is stuggling a bit more this time.

This has been a long post but this is how this whole process feels – long —-

Please pray for all of the concerns listed above – and in advance, we thank everyone for praying for Chrissie and Emily and everyone involved.

P.S. This blog post is being typed quickly and on a strange computer and trying to get it done before my prepaid time runs out(!), so please excuse any grammatical or spelling errors.  I will try to add the pictures at another time but cannot seem to figure it out now!

Bump in the Road

This will be a quick post to update everyone that there has been a bump in the road in Emily’s treatment plan. She was supposed to go to the Infusion room today for chemo, then have two weeks off. Instead, she was running a temp of 101.8 this morning – so, rather than chemo and going home, she was admitted to the hospital for what could be three or more days. They did blood cultures to see if the temp was caused by a bacterial infection and then started her on antibiotics. If the labs come back negative, she may get to go home – if positive, she will continue on antibiotics. Along with the temp, her ANC count was zero. Since the ANC count measures her level of immunity, that zero count also landed her in the hospital. Even if her cultures come back negative, the potential is there that she will have to remain hospitalized until her immune system has kicked back in a bit more. Basically, it’s a lot of questions waiting for answers and a lot of upset to the whole family. Last-minute care had to be arranged for the other kids and, as always, friends and family have already stepped in to help.  Chrissie is stuck in the hospital again and even though  the hospital nurses and staff go out of their way to help during her stays, the hospital stretches can be a mixture of upset schedules, boredom, and worry – and missing her family.  Once this bump is ironed out, Emily will get the chemo that she missed today.

So, please pray that the cultures will come back negative and Emily’s ANC count will increase rapidly. Pray that Chrissie and Emily will be able to go home before three days, which has happened in the past, because Emily has a pattern of not following the “normal path!” Pray for Jason and the kids. Pray for everyone who is stepping up to help them. And pray for the hospital staff, who have been so wonderful during these stays.

And, good news, Auntie Plum has arrived in Rwanda and has made very brief cell phone contact, saying that she is safe and sound . She will be meeting her host family tomorrow, with whom she will be staying for the first three months. And she will be shopping at the local market for the things she didn’t bring because somehow the “mandatory packing list” didn’t get to her! If everything went smoothly, it wouldn’t be as much fun, right?!  Who needs sheets, anyway?!

Passing The Torch —

Saying Goodbye at the airport

Auntie Plum/Elisabeth, Chrissie, and Emily – saying goodbye at the airport

Elisabeth/Auntie Plum, who has been the author of this blog, is now officially off of American soil and is currently in the air, on her way to her Peace Corps adventure in Rwanda. If you are not sure of where the heck Rwanda exists on a map, join the club – we all had to look it up! It is a small, land-locked country in Africa – about where the continent starts to narrow and a little to the right. According to the State Department, it has no travel restrictions and it is safe to go there – according to a Mother’s – my – heart, it is a little worrisome. Although, exciting and an adventure. We will miss her. She returned a year ago from New York City to spend time with her family while preparing to leave for the Peace Corps in May – or so we thought. That plan got derailed by an errant medical record – for your information, the Peace Corps is meticulous about having medical records all in order – but in retrospect, God had His hand in the picture because Elisabeth has been invaluable both as physical and emotional support to Chrissie and Emily and all the extended family and also as this blog author and writer.

This is the first official post by another writer – this particular one being Grammie/Genie. My plan was that we should all continue writing the blog but pretend that it was still Auntie Plum, but that she was sick, because there is no way we will be able to fill her shoes and write as thoroughly and beautifully as she has been. That plan got vetoed!  My big frustration now is that I can’t figure out how to post the pictures!

So, continuing on with Emily’s story. She will be going in to the Infusion room this Friday for IV chemo, then will have two weeks off.  She was on steroids again last week, as she will be intermittently for the next two years.

Stitch on steroids!

Emily did not like being on the ground
while Momma and Auntie Plum said goodbye!

Emily is NOT good on steroids! When she is on them, the full meaning of why she is called Stitch comes out. Chrissie has her hands full with a two-year-old who wants to be held all of the time, eat all of the time, and not be satisfied with anything all of the time. She is like this pretty much 24-7 and Chrissie has to deal with her as well as taking care of her other four children and her husband. Please pray for Chrissie. She is the most patient, sensitive, caring Mother any toddler would want and any family could ever have but she needs a lot of support to be able to stay healthy herself. Pray for her and Jason as they continue along this winding road that has lots of twists and turns and often unforeseen bumps. Pray for the army of family and friends who are supporting this “little” family by rearranging their own lives to provide babysitting, meals, and hospital support – along with all of you who have been supporting them financially and in prayer. And please pray for Auntie Plum as she arrives in Rwanda and starts her adventure there.

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