Tag Archives: Smiles

Haircut!

So our appointment was sooner than I thought, and Emily got her hair cut today! It is SO cute! We were a little sad to see the sweet curls go, but the bob suits her perfectly, and her hair feels so thick and healthy now. Seeing her new intentionally-short hair feels liberating -like saying goodbye to the had-to-be-short-because-she-lost-it hairdo, and saying hello to an on-purpose hairdo.

Best part, she loves it! She danced around the salon singing, “I’m so cute! I’m so cute!”

With Kaitlyn before ...

With Kaitlyn before …

freshly shampooed

freshly shampooed

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loving it!

loving it!

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so cute!

so cute!

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She loves it!

She loves it!

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Three years later!

Hello out there! My mom, Grammiex10, keeps reminding me that people still read this and I should post an update, but we have been busy and this blog has fallen by the wayside. If you’ve been waiting for an update, I’m sorry! But, as we all know, no news is good news!

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The three year anniversary of Emily’s diagnosis came and went without fanfare. I knew it was the 8th, but I didn’t feel any emotion really. The day that was the most emotional was actually the day our Classical Conversations group went roller skating for Valentine’s Day, since that was the event we went to right before taking Ems to the emergency room. But this year Emily strapped on her roller skates and skated to her heart’s content! Then she sat on the floor with some friends and proceeded to stuff her face with valentine candy 😀

She’ll be five in just two months! And her growth spurt has continued to take off. She has just about caught up to the average height and weight of kids her age! She’s louder than the average kid her age … which only shows that Stitch is 100% back!!

Each month she sees her oncology team for a physical and lab work. Her blood numbers are still looking great! Hemoglobin, platelets, white blood cells, and her ANC are all in the healthy range. Her IgG is still lower than Dr. Ducore would like during the cold and flu season, so she’s still receiving IVIG once a month, and so far she’s been really healthy. The only bummer is that she gets a headache and neck pain for 2-3 days after, but she’s still a trooper and deals with it without much complaint. She just received her IVIG on Thursday, so today she took it easy, rested most of the day on the couch with a cold cloth, and took a couple naps. She’ll be good as new tomorrow.

Waiting for her IVIG on Thursday

Waiting for her IVIG on Thursday

If you can believe it, we have an appointment for a hair cut in a couple weeks! Her hair is getting longer, but it’s still somewhat uneven and thin, and her bangs are constantly in her eyes, so we’re going to go for it! Hopefully my hairdresser can even it out while still giving Emily the impression she has “Rapunzel hair” 😉 I’ve been showing Emily pictures of cute little bobs, but we’ll see what works when we get there. I will post photos!

French braids after her bath!

French braids after her bath!

Last week we were able to help bring Build-A-Bear to the children’s hospital again!! Jason, along with a co-chair from CMN, and a sponsor from a local Chick–Fil-A, raised enough funds for all 71 admitted patients to build their own bears. Because Jason had to work, I got to go this year and help the Build-A-Bear staff and the Child Life staff deliver stuffed animals and hearts to the children. Each child went through the heart ceremony to bring their heart to life, then the med surge students sewed the animals up! It was awesome! By far my favorite event for the hospital.

Next week, on Tuesday, March 3, IHOP is hosting its annual National Pancake Day for the children’s hospitals. Go into any local IHOP and order a shortstack of buttermilk pancakes for free! But don’t forget to leave a donation that will go directly to your local children’s hospital! Or you can drive by the hospital on Monday, where they will have a mobile pancake station set up! Get your pancakes and make a donation there. We were so blessed by this event shortly after Emily was diagnosed three years ago, and we’re excited about it this year too! We even had the opportunity to talk with our local IHOP stores to thank them for what they do and share Emily’s story. We have seriously loved being able to meet and thank all the people who support our hospital!

Another annual fundraiser for the hospital is the tattoo-a-thon held by Wild Bill’s tattoo shop every February. Last year I got cold feet, but this year Jason and I took Emily, and I may have supported the cause with a tattoo of my own! Wild Bill has raised over $150,000 for the hospital over the years, plus another $18,000 this year. They even have a room in the PICU named for them.

That’s all for now! I’ll update again soon.

A little update after a long break

The first day of Classical Conversations

Excited for her first day of Classical Conversations

I have so much to write about, so many wonderful things that have happened since I last posted in (ahem) July, that I haven’t known where to start. So I haven’t 😀 But tonight I have the urge to write just a little bit, to let you know how Emily has been doing since she completed her treatment a few months ago. Hopefully, in the next couple of weeks, I’ll have the time to come back and fill you in on all the cool things (like her Make-A-Wish trip for one!).

Playing with her best friend, Kayla

Playing with her best friend, Kayla

It has been five months and three weeks since she took her last dose of chemo, and four months since she had her Port removed … and she is doing GREAT! It was all very strange, at first, to not give her daily chemo – I had to squelch my fears and anxiety at what not having the poison in her body meant, sometimes worrying that the cancer would come back as soon as the last of the chemo cleared from her system. And, truthfully, I do still have to turn those fears over to God daily, because that is a real possibility. But she is still in His hands! And today she is doing wonderfully.

Holding newborn friend, Esme

Holding newborn friend, Esme

Monthly labs have shown that most of her counts are returning to normal. Her platelets and hemoglobin are both in the normal range, and many of her blood chemistry numbers are back in the normal range as well. Her white blood cell count has been running a bit low, but not so low that we have to quarantine her. Related to her WBCs, her ANC (immune system indicator) has also been a bit low, but, again, not terribly so. The only bummer has been that her IgG counts have not gone up yet, as hoped. So she began receiving a monthly dose of IVIG in November, and she’ll continue receiving it through the winter months. Because she no longer has a port, she has to have an IV inserted into her arm, which really stinks, but she is a trooper! I was nervous before her November IVIG infusion, after what happened in July, but everything went smoothly!

Trying on hats during Black Friday shopping

Trying on hats during Black Friday shopping

There really isn’t much else to tell about her health, which, in itself, is good news! She has had quite a growth spurt since ending treatment -she won’t be winning the “Tallest Student in Class” award anytime soon, but she is finally growing! Her hair is also s-l-o-w-l-y- growing longer. She still rules the house. I don’t think that’s going to change anytime soon 🙂

Reading with Bapa

Reading with Bapa

 

 

Remembering our vets at the Veteran's Day Parade

Remembering our vets at the Veteran’s Day Parade

Monthly clinic visit as Anna, of course

Monthly clinic visit as Anna, of course

 

 

 

 

 

Last, here’s a video we filmed while waiting for Dr.Ducore at her last check-up.

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!