Party Announcement

Hi Everyone, if you got a notice from Facebook telling you the party was canceled, ignore it! The party is STILL ON! There was a glitch on FB, so please spread the word to anyone who asks: We are still celebrating on Saturday, July 19th, from 1:00-5:00 at Calvary Chapel Laguna Creek, 2212 Kausen Dr, Elk Grove, 95758.

Unfortunately, the Blood Drive has been canceled. We were not able to make it work. However, we will still have a rep from the Blood Source there to give out information regarding blood donations. She will also be taking signups for the Bone Marrow Registry!

We hope to see you ALL there!

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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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A Fresh Haircut

Emily’s hair has been on quite the journey over the past few years: thinning, falling out completely, slightly growing back in, falling out again, growing in thick and curly, thinning and falling out again, growing back in again, and now thinning and breaking. She now has very fragile hair, and it’s been growing in funky, so last week I took her to my hairdresser to even things up a bit. Emily loved it and showed off to everyone saying, “I got a short cut!”

Before the cut

Before the cut

sitting so still

sitting so still

blow dry!

blow dry!

All done!

All done!

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!

Life

“The thief comes only to steal and kill and destroy; I came that they may have life and have it abundantly.”
John 10:10

God has blessed Emily with abundant life and boundless energy! He surely knew what He was doing when He knit her together in my womb! The doctors and nurses knew from the very first day that she is a fighter, and she has proved over and over again that cancer can’t keep her down.  She amazes everyone with her spunk and spirit. She truly is a miracle.

Last week she attended a Play Camp while I attended a conference, and at the end her class performed a couple of songs they learned. The video below is about 7 minutes long -if you don’t have the time to watch the whole thing, just know that she never stopped bouncing 😀

This week she is attending VBS (Vacation Bible School) with her siblings at the church I grew up in. Her teacher last night, who was one of my Sunday School teachers years ago, was overwhelmed with her energy and life! Tonight she had the honor of carrying the Bible during the Opening Ceremony, and she was So. Excited! She is truly blessing the people around her who have spent the past 2 1/2 years praying for her.

Emily, the Bible Bearer, with Pastor Berry

Emily, the Bible Bearer, with Pastor Berry

Brother William carried the American flag next to her

Brother William carried the American flag next to her

Holding it high for the pledge!

Holding it high for the pledge!

I am just so thankful for the spirit of joy that God has blessed her with. No matter what her life holds, I know He is with her, caring for her and loving her.

Party! Party! Party!

 

We’re almost there …love-01Anyone and Everyone is invited to celebrate with us on Saturday, July 19th. We’ll be at Calvary Chapel Laguna Creek Church (2212 Kausen Dr, Elk Grove) from 1:00 – 5:00 pm, and you’re welcome to drop by anytime. We’ll have some refreshments, fun stuff for the kids, us adults can visit, and – almost most important – we’re hosting a blood drive to give back some of the tremendous amounts of blood Emily was donated.

**I do need a certain number of people committed to donating blood before the Blood Center will agree to send their bus out, so if you can donate, please contact me right away. Email loveclanx7 at gmail dot com with your name and phone number**

We’d love to see you all there, so we can give you a great big hug and say thank you for supporting us!

Please feel free to pass this invitation along to anyone you know who has supported us through prayer or any other means!

 

Last Day of IV Chemo!

Emily & Nurse Tina after her last dose of Vincristine!

Emily & Nurse Tina after her last dose of Vincristine!

Today was Emily’s last day receiving IV chemo! After her monthly clinic appointment this morning she was given her Pentamidine infusion (antibiotic), then she got her Vincristine at about 2:00 pm. And we walked out, never to return again!

Haha. Just kidding on that last part. We go back in in two weeks for her IgG transfusion, then we’ll be back monthly for clinic and lab draws. And she may still need to have IgG as well. As excited as we were this morning, the rest of the day was somewhat anticlimactic, knowing we’ll still be around for a long time to come.

She’ll continue taking her daily chemo pills for another 17 days, and she began her last round of steroids today. I tried to talk Dr. Ducore into letting us skip this round, since we’re so close. But he wasn’t going for it. So one more week of Steroid Stitch. And just two more weeks of chemo. Then we. Are. Done.

All done!

All done!

Health after 2 1/2 years of chemo …

I’ve posted a lot of uplifting, fun stuff lately, because that’s what’s been going on around here, but I’ve neglected to share much about Emily’s health! Overall, of course, she is doing great. The protocol of treatment has kept her in remission, and we haven’t had any setbacks in a long while. With the end in sight, things seem to be smoothly sailing along.

Emily’s current course of treatment is the same as it’s been for a year and a half. She receives a monthly IV chemo infusion (Vincristine), a monthly IV antibiotic infusion (Pentamidine), a monthly IV Immunoglobulin (IgG) transfusion; she takes daily chemo pills (Mercaptopurine), once-a-week chemo pills (Methotrexate); and she has one 5-day long pulse of steroids (Prednisone) each month. She was receiving spinal taps with chemo (Methotrexate) each month, then every three months, but she had her last one in April. And of course she has a myriad of support meds prescribed for her to take on an as-needed basis. Meds such as Tylenol for pain, Colace and Miralax for constipation, Famotidine for an upset tummy, and a couple anti-nausea meds. She rarely takes these, as we don’t like to introduce too many extra chemicals into her system -and no, the irony isn’t lost on me, since we give her actual poison each day. But we do try to help her get through side effects as naturally as possible, so I’d rather have her eat a few prunes than give her Colace. But, of course, we give her  whatever she needs if she truly needs it. It really helps that she’s now old enough to effectively communicate how she feels!

Anyway, like I said, overall she really is doing well. She has energy and spunk, and people who don’t know her cannot tell at all what she is going through. Often, people who do know her but haven’t seen her in a while are quite surprised at how healthy she looks! And for that we really are thankful. She is strong, tough, and a fighter, and I think she is handling her treatment really well.

But underneath her glowing cheeks, longer hair, and plump belly, I can see how much of a toll the last 2 1/2 years are taking on her body. Around Christmastime last year she began to develop a rash all over her body. That has since faded, but in its place is dry, peeling skin. Her hands and feet are the hardest hit, though we’ve been able to effectively treat them with salves and oils. But the bottoms of her feet are often peeling, and her fingertips peel so much that she’s taken to nibbling the loose skin off, causing her fingertips to bleed. Sometimes her hands hurt so badly that she holds them out to me and cries and cries. We rub oils on them and I rub them, and I pull them out of her mouth every time I catch her nibbling. Her nurse practitioner says it’s a common side effect of chemo, and we believe it will go away soon after her treatment ends.IMG_20131221_121203_002

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Another side effect we’ve noticed more and more is pain and tiredness in her body. Neuropathy and leg pain have haunted her throughout her treatment, both from the cancer itself and from the treatment, so it’s nothing new. However, there are periods of time when she’s really in more pain than usual, unable to play as long as usual, and simply tired. Often she complains of head and back pain, and most nights I help her get to sleep by rubbing her body, head to toe. I was quite concerned about it at the beginning of May, and expressed my concerns to her nurse practitioner during her monthly clinic visit. But when her labs returned normal, Kay proclaimed it another side effect, saying that Emily’s body is just plain worn out.

A few weeks ago she developed a slight cough that won’t go away, nothing serious. It’s probably, most likely, just a simple allergy-type cough, but it’s one more thing I’m paying attention to.

I’m really looking forward to June 26th, when she takes her last does of chemo! My heart just sings, Praise God! Hallelujah! at the thought! I cannot wait to have my little girl completely back, free of poisons and toxins -and cancer.

After Emily’s treatment ends, she’ll continue to visit her oncologist once a month (though she actually now sees her nurse practitioner each month -see below for the funny reason why!), and she’ll have a monthly lab draw. They’ll be watching her blood levels to make sure everything’s staying as is should (ANC normal, WBC normal, etc. ), and they’ll also check her IgG levels to see if she needs a transfusion. We really have no idea how long she’ll continue to need this support. The normal IgG range is 528-2190, and her labs each month come back at 360-430, so she’s still running pretty low. Hopefully, once she’s off treatment, her immune system will kick back in and begin making IgG on its own again. And she’ll continue taking antibiotics for another six months, but these shouldn’t affect her health.

So that’s what we’re looking at! It saddens me to see Emily in pain, but I’m grateful we’re nearing the end, and it’s not as bad as it could be. God created her perfectly, strong enough to fight this.

On a totally unrelated note, here’s a bit of fun: the dress Emily wore to the MWOY Gala was created by one of my favorite children’s brands, Eden’s Bouquet. My mom sent a photo to the designer, who posted it on her website

** When Emily has clinic each month, she sees a variety of doctors and nurses, and her exam isn’t always performed by her oncologist, but rather sometimes by another specialty doctor or the nurse practitioner. Remember when Emily broke her leg last May? And when she developed a sepsis infection last August? Well both events occurred just days after her monthly clinic visit, and coincidentally, both of those times her oncologist, Dr. Ducore, was the one who did her exam. Well, he’s decided that he’s jinxed, so instead of performing her monthly exams, he lets the nurse practitioner, Kay Wells, perform them, and he just pops his head in to say hi and ask if we have any questions. He always pokes his head in the door, and says, “I’m not here, in case you have any questions.” He’s a hoot.

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

Celebrations!

We’ve been super busy this season (I’ve said that before!), and I haven’t posted some important events.

First Time Swimming!

Back in March, we headed down to Southern California to spend a weekend with Jason’s best friend and his wife. It was already Summer there, so we spent plenty of time in the pool. Even Emily. For the first time in nearly three years. You can imagine how excited she was! But even more excited, were her brothers and sister, who have been waiting for this moment since her Broviac was placed 2 1/2 years ago.  Pictures will share more than words can.

First we picked out the perfect swimsuit.

First we picked out the perfect swimsuit.

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She had plenty of well-wishers!

She had plenty of well-wishers!

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swimming!

swimming!

End of Treatment!!

Second, Emily only has 37 days of treatment left! She’ll take her last dose of chemo on Thursday, June 26th! I’m typing with tears in my eyes and a lump in my throat as I think about how close that is. February 8, 2012 seems so very long ago, and we are all overjoyed to be this close to the end! We are planning a huge celebration mid-July (we’re aiming for Saturday afternoon, July 19th), and everyone is invited! It will be open-house style with appetizers, fun for the kids, and hopefully full of everyone who has supported us and traveled this journey with us. I’m working on having the Blood Center mobile bus on site so we can host a blood drive (remember how many transfusions Emily had the first year?) and a booth set up to register bone marrow donors. The only missing detail at this point is a location … that’s been more difficult to secure than I anticipated. But we’ll keep you updated and send out an invite once it’s set!

Last Lumbar Puncture!

Third, seeing as how we’re so close to the end, Emily has already celebrated one huge milestone -her last spinal tap with chemo! Tuesday, April 15th was the last time Emily had to undergo a spinal tap and receive chemotherapy into her spinal fluid. She and I were thrilled to celebrate her last LP (lumbar puncture) and brought gifts to the Children’s Surgery Center nurses who have treated and cared for her for the past 2 1/2 years. I had a difficult time deciding what to bring them. How do you ever say thank you to the people who have helped save your child’s life?  We finally decided on buckets of candies with a “Nurses Survival Kit” tag, a photo of Emily with a thank you note, and a poster we printed that says, “You’ve never really lived until you’ve done something for someone who can never repay you.” These pictures are from that day. I’m a terrible photographer, please forgive the out-of-focus/blurry shots!

Our two cheerful receptionists, who got their own bucket to keep up front :)

Our two cheerful receptionists, who got their own bucket to keep up front 🙂

In Isolation, getting ready

In Isolation, getting ready (we’re typically in that room off to the right of the photo, because of Emily’s MRSA, but today that room was already taken, so she was blocked off in one of the partitions.) Anyone who comes in has to gown up, including me.

Accessing her port

Accessing her port

Dannika, one of our favorite nurses

Dannika, one of our favorite nurses

another favorite (who am I kidding, they're all favorites!)

another favorite (who am I kidding, they’re all favorites!)

Passing the time with finger painting with Child Life Specialist, Ginger

Passing the time finger painting with Child Life Specialist, Ginger

In the OR, ready for the procedure.

In the OR, ready for the procedure.

And she's done! De-accessing her port so we can go home (or, rather, to the Infusion Room for more chemo).

And she’s done! De-accessing her port so we can go home!

Emily handles these like a champ, walking out on her own.

Emily handles these like a champ, walking out on her own.

The Nurses Survival Kit tag we put in the candy buckets

The Nurses Survival Kit tag we put in the candy buckets

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 4th Birthday!

Last, another celebration was Emily’s 4th Birthday! We already shared how she spent her morning at the State Assembly, but after that, we headed to the Cancer Center for an IVIG transfusion. We love her nurses. Absolutely, positively, more-than-words-could-ever-express love them. They treat Emily as if she were their own and make this journey so much easier and more delightful for us all (the photo halfway down is of her sitting in front of a “vanity” her nurses set up for her when she had to go to the Infusion Room unexpectedly). So, of course, they went above and beyond to make her birthday special when she went in that day.

bubbles while they wait

Nurses Dena, Becca, Fancy Nancy, Doreen, and Mary

Nurses Dena, Becca, (Fancy) Nancy, Doreen, and Mary

They decked out her chair! You can’t see everything in this photo, but they gave her a princess pillow case, princess tea set, stuffed animals, princess stickers, a goody bag of snacks for the day, and even had the DVD player set up with Frozen already queued. They also taped up a special sign above her chair. IMG_20140501_143644864

 

She squealed with delight when she saw everything. Maybe at eight or ten years old, spending her birthday in the Infusion Room wouldn’t have been so cool, but at four, being pampered by some of her favorite people was perfect.

Last, another of our favorites 🙂 Nurse Tina. She wasn’t there for Emily’s birthday, so we had to snag these photos last week.

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