Tag Archives: Love Children

Back to Camp Okizu

The older four Love Children left for Camp Okizu yesterday. They’ll spend seven days at SIBS (Super Important Brothers & Sisters) Camp, where they’ll enjoy all the usual camp activities, sleeping under the stars, and having a great time with other siblings of cancer kids. The boys went last year, but this is Sophia’s first time going without us (!!!!) – I’ve already called the camp office to check on her. She’s fine. We are so blessed to have this wonderful adventure to participate in!

But we cannot wait until they get back! It’s not quiet here with just Emily … but it is weird not having everyone else.

Ready to go!

Ready to go!

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We’ve (finally) Reached The End of Treatment!!!!

Hip! Hip! Hooray! (cue Lego Movie theme music) “Everything is awesome!!”

Yesterday was Emily’s Last Day of Treatment!! She received her very last dose of chemotherapy last night! We shot a little video of the moment.

We were so excited about it that we forgot to give her something very special -her Purple Heart Bead of Courage. Modeled after the honor in the armed forces, the Beads of Courage Purple Heart is awarded to children who complete their treatment, exhibiting bravery throughout. She’s been holding onto this bead for the past two weeks, anxiously waiting for this moment!

So we’re done! Two and a half years – or 863 days – of chemo. Finished.
Praise God.

2 1/2 years of Beads!

2 1/2 years of Beads!

Costco and the Children’s Miracle Network

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We’ve mentioned our involvement with CMN (over and over  and over  and over  and over  and over again), and also how we’ve been able to share our story with Costco, one of CMN’s greatest supporters. We love the people of Costco. They are kind, compassionate, generous, and supportive, and they’ve showered us with their affection more than once in the last couple of years. In March of this year the kids and I had the opportunity to share our story with the regional Costco managers again, and afterward, some of them came up to thank us. One of them was a cancer survivor and Costco Depot manager, who invited us to share Emily’s story and Beads of Courage at their 2nd annual CMN/Costco Golf Tournament. Of course, we were delighted to be involved!

So on Saturday, May 3rd, we headed down to Lockeford for the tournament, which was hosted by the Costco Depot and attended by Costco employees and vendors. Every single person we met was smiling and laughing and happy to see us.

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After everyone was registered, they all gathered for a group photo, inviting us to join. Then they introduced us and we briefly shared our story. We brought Emily’s Beads of Courage, and the kids held them up as I talked. Mostly we wanted to thank them for their commitment to CMN. Costco has been a HUGE supporter of CMN for many years -you’re probably seeing the yellow and red CMN balloons at your local Costco now (May is their big drive month). However, in addition to the balloon sales at their warehouses, the Depot began this annual golf tournament -all on their own -and last year they raised $34,000. I haven’t heard the numbers for this year, but I’m sure it was more.

After we spoke, they surprised us by bringing out a birthday cake for Emily while they sang Happy Birthday. They also brought out goody bags for each of the children -and you can imagine how big and full the goody bags were, being from Costco! All the kids also received their very own Costco Employee lanyards! Those were a hit 🙂 The rest of the day was spent enjoying the sweet people, good food, and golf. We all had a blast and are so thankful we got to spend time with such amazing, warmhearted people.

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One of the raffle prize tables.

One of the raffle prize tables.

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Yum!

Yum!

CMN Director, Jacqueline Mills, is the most amazing woman.

CMN Director, Jacqueline Mills, is the most amazing woman.

Sneaking in a snooze

Sneaking in a snooze

Home-again, Home-again, Jiggity-jog

And just like that, we’re home. All five children are tucked snugly in their beds. We snuggled and hugged and kissed and shared stories and laughs. We read bedtime stories and ate dinner together. Emily received so many squeezes that by bedtime she was pushing her brothers away. Typical. She begs to see them when we’re at the hospital. I think she doesn’t want them to get too high an opinion of themselves 😀 She and Sophia decided to sleep in the same bed to be closer to each other. That lasted all of 20 minutes before they had had enough of each other and ended up in their own beds.

So after a successful Broviac removal yesterday, a switch to oral rather than IV antibiotics, plus a completely rebounded little girl, Emily’s doctors decided she could go home today. I was a little taken aback, as I thought they wanted to monitor her reaction to the oral antibiotic longer, but they assured me they wouldn’t let her go home if they didn’t think it was okay (of course), and we were all completely done with the hospital, so I didn’t put up too much of a fight 🙂 She had one last lab draw and then her peripheral line was taken out. And we got to bring her home without anything attached to her!

No tubes!

No tubes!

Now Jason and I need to make the decision between placing another Broviac or inserting a Portacath for her continued treatment. We have researched, talked to the doctors, the nurses, the surgeons, and to other families with central line experience, and we’re still not sure which we want to go with. The Port would allow a lot more freedom for Emily. She could take baths and go swimming, and we wouldn’t have to worry about her tubes being pulled or getting caught on something. The downside is that each time she’s accessed she’d have to get a poke, since the Port is under the skin. However there is a numbing cream that helps, and everyone we’ve talked to says most children don’t feel a thing. The bigger downside is that she’d only have one line to run meds/fluids/etc. through, so if certain meds aren’t compatible, one would need to be stopped while another runs. Or she’d need to get a peripheral line placed in order to run two things at once. Now, this isn’t even something we’d encounter unless she ends up back in the hospital again. And we’re not expecting to! The Broviac seems easy to us, since we’re used to it. She can have as many things running as needed, since there are two lines that don’t intercept each other, and she’s already used to no swimming and shallow baths. But it would be nice to not have that worry of tubes connected to her heart hanging outside her body. Regarding risk of infection, which is my number one concern, both the Port and Broviac carry the same risk. That’s just something we’re not going to get away from, unfortunately. We have some time to make the decision. Our appt with her oncologist is scheduled for Monday Aug 26th, and her surgery is scheduled for Friday Aug 30th. In the meantime, we’re going to enjoy a central-line-free child.

I originally sat down to share my emotions, thoughts, and feelings regarding this latest hiccup in Emily’s journey, but once again I’ve chickened out. I don’t know why, but I have a hard time sorting it all out and putting it down on paper, so to speak. I can say that this past week feels completely surreal. Less than a week ago I was asking the doctor if Emily was going to make it, and now we’re back home as if nothing happened. I think that in my own mind I gloss over these serious events as a coping mechanism, and when they’re over, I file them away and almost forget they happened at all. I am always surprised when a doctor or resident recites part of Emily’s file and comments on how difficult her journey has been or how many close encounters she’s had. I’d like to think that it’s because my faith is so great and I’m staying positive, but the truth is that it’s much easier to deal with this whole unsavory situation when I don’t think about it at all.

And now I feel completely uncomfortable for sharing that much, so I’m going to change the subject and share some cute pictures of Emily 🙂

A visit from Cousins and Auntie Marni to brighten up her day!

A visit from Cousins and Auntie Marni to brighten up her day!

Love Cousins

Love Cousins

Playing with Grammie

Playing with Grammie

Being silly with Grandma & Papa

Being silly with Grandma & Papa

And Emily “reading” to Grammie

Another thing I wanted to share tonight is my gratitude. Thank you everyone who prayed, visited, brought meals to my family, and watched my children. This past week was an emotional one, and it was such a huge, huge blessing to not have to even think about how my family was faring without me. They were so well taken care of, as were Emily and I, and you all have my deepest gratitude.

Rounding Third

Daddy & Lil’ Stitch

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

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

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

The Loves at the California State Fair

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

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

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

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.

Happy Birthday Emily!!!

Emily is Two!!

Two years ago, God gave Christina and Jason a precious gift, their youngest child, our adorable Stitch. For two years, we have all loved and adored the spirited little girl who smiles wide and laughs from her belly. She has always been the life of the party and today was no different.

Emily started her day with a procedure at the surgery center, where the doctors and nurses had hung a birthday sign and gave her a flower wand that she waved through the halls. After surgery, some of her favorite nurses brought Emily a new party frock!

Around midday, Emily’s room was overwhelmed with cousins and siblings, Aunties and Grandmas! The nurses and child life team brought cookies and the music therapist led the kids in songs. Aunt Marni shared butterfly cupcakes and Emily opened presents and played with delight.

Aunt Marni and Emily's cousins!

A birthday wouldn’t be complete without some good medical news and we were happy to hear that Emily’s blood counts are good, her ANC is still slowly rising, and the feeding tube is NOT being put in! We are looking forward to a release in the next 48 hours so maybe Stitch can play in the weekend sun.

Showing Daddy her new necklace

We’ll upload more birthday pictures and video soon!

Special beads for a special girl

Emily’s new phase of treatment has kept her quite busy. It has kept everyone busy! But while we are all tracking her journey by blood counts and number of appointments, Emily is keeping track with her beads of courage.

Emily’s beads are a marker of every procedure and milestone she undergoes throughout her treatment. They are a reminder of everything she has survived and the courage she has as she continues to fight. Christina keeps track of every chemo treatment, every needle poke, every x-ray, biopsy, and infusion so that Emily can get the beads she deserves. Her strand is continuing to grow, and is already much longer than the picture below shows. It grows so fast, it’s difficult to keep up!

Many people have expressed being moved by the beads of courage after our first post. The beads are, rightly so, becoming a symbol of courage for many of us. Emily is just ten days away from her 2nd birthday and already she has demonstrated a strength of body and spirit that is encouraging for all the adults around her. Friends and strangers are using Emily’s beads to share their own stories, to give support, and to remind us all to keep Emily in our prayers.

At the end of her strand of beads above are two new special beads. The first, a dragonfly, was given to Emily by a family friend, Marlene. The dragonfly means “believe” and reminds us all to believe in the 100% cure we are praying for daily.

Joy & Marlene bring Emily a dragonfly bead

The little kitty cat bead right after it was given to Emily by a woman who she has never met but who was touched by Emily’s courage. Calling herself the “Crazy Cat & Cancer Lady”, she sent Emily this bead along with a note that shared her own story of finding out she had a brain tumor and the many treatments and tests that came after. She told Emily the cat bead, “with her sunny smile and friendly wave, is to remind you that God and His people love you and see you, and that you have lots of friends all over the world!”

Some of those friends, students of a family friend, created their own strand of beads in Emily’s honor. Displayed in their classroom, these paper beads are a reminder for all the students to keep Emily in their prayers.

Emily’s Consolidation treatment has continued with a heavy stream of chemotherapy drugs and frequent trips to the hospital. Her blood counts have dropped, making her neutropenic, and a recent call from the doctor has raised concerns that something in her labs is not quite right. In the midst of this chaos and uncertainty, Emily has had good days. After whole blood and platelet transfusions yesterday, Emily had full color in her cheeks and was mobile and playful in a way that reminds us all of the little Stitch she used to be before Leukemia became a reality of our lives. It is amazing how a little healthy blood can transform this sick child.

That's a happy child!

As always, we share these happy times with all of you while asking you to keep Emily and her family in your prayers. As her beads symbolize, Emily is undergoing so much. But she is strong and spirited and in the arms of our Lord.  We pray for a day her body can keep itself healthy and her smiles can warm our hearts every moment.

Please keep these requests in your prayers:

  • Emily will go see her Oncologist on Monday to hear the results of recent lab work that we have been told was “not as expected”. Please pray this is not another setback and please pray the family has peace as they wait to receive the news.
  • Please pray for Christina, that she gets rest and opportunities to relax. Please pray for a mother’s peace as she carries the heavy burden of wanting to protect her child and that she may trust in the Lord and the doctors to do everything they can to keep Emily safe.
  • Please pray for Ethan, Adam, William, and Sophia – Emily’s older siblings. Pray that they continue to feel loved and safe and know how special they each are. Pray for understanding as they live with Emily’s disease and all the changes it has brought to their lives. Pray that they also have strength and courage. They are all four little Warriors alongside their sister.