Author Archives: chrissielove

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 😀

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.

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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

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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!

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.

And We’re Home (aka Going Out With a Bang!)

So, the last few days were not exactly what we had planned … but we’re home now and Emily is doing great -back to her normal, spunky self.

I’ll give a brief recap, just in case you’re lost as to what happened – perhaps because you haven’t read all the posts, have read the posts but didn’t understand them, read the posts and got completely confused with all the changing information, were taken by complete surprise because you didn’t even know she was having her port removed (sorry Gaby!), or you’re like me and you wait until you have all the information before you pay attention(!).

Thursday morning Emily and I checked in at the UC Davis Children’s Surgery Center  one last time so she could have her port removed. Now that she’s completed her treatment, and she’ll only need one lab draw a month (and possibly one IVIG transfusion a month), it’s best to take the port out to reduce the risk of an infection.

Waiting for surgery

Waiting for surgery

We passed the time visiting with all our beloved doctors and nurses while Emily colored on her sheets. We haven’t been to the surgery center since April, and we don’t expect to go back, so it was fun to see everyone and say goodbye. 

Heading to the Op Room!

Heading to the Op Room!

Dr. Abramson, the surgeon who initially placed her Broviac 2 1/2 years ago, performed the surgery to remove the port. All went well, and she was back in Recovery in just one hour.

sleeping anesthesia away

sleeping anesthesia away

As I waited for Emily to awaken, I looked around the Isolation Room and took it all in. We’ve spent many, many days here, and while I’m not sad to say goodbye, I did feel a bit nostalgic. I watched the colored lines and listened to the different beeps of her vitals being monitored, and I thought, “This is the last time she’ll be hooked up to a monitor, the last time she’ll rest in one of these beds.”  (Ha!)

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She was a bit groggy when she awoke, but she asked for potato chips, so she must not have felt too bad 😉

Her nurses gave her a special card and gift. She doesn’t look excited here, but she really loved it.

Once she had eaten and had a little drink, we said our final  tearful goodbyes and headed out. She couldn’t quite walk on her own, and my arms were full, so she got to be pushed out in one of the new carts (donated by our amazing friend, Kimberly Kaufman at Angels for Hearts).

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We headed straight to the Cancer Center for her monthly IVIG infusion. Our hope is that this was the last one. Now that she’s off treatment, it’s very likely that her body will begin to produce the missing antibodies on its own again, and she will no longer need this extra immunity boost.

All hooked up

Getting all hooked up

She’d had a peripheral line placed in her hand while she was under anesthesia, and she was very careful not to knock or jostle her hand. She just kind of held it out the whole time.

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Her transfusion took about 1 1/2 hours, and she was quiet and restful the whole time. She seemed to still be groggy from the anesthesia, so she watched a few movies and relaxed.

Just as her transfusion finished, only 5 grams of the antibodies, and the nurse was setting up her flush (saline to push the Ig all the way in and to clear the line), she started slouching down in her chair. Then all of a sudden she began shaking and crying out that she was cold. Thinking it was simply cold in the room, I sat in the chair and cuddled her in my lap. But her shaking became more and more violent -so much so that she folded herself into a fetal position and cried out that her back HURT! She kept saying, “I’m cold! I can’t do this!” And then I realized she was burning with fever. Her nurses responded instantly. They hooked her up to watch her vitals – her heart rate shot into the 170s, her blood pressure plummeted to 80/50, and her temp measured at 39.5, or 103.1 -they called in the oncologist team, and they pushed in a bolus of fluid (a fast running, large amount of saline to bring the blood pressure up).

At first everyone thought it might be an allergic reaction, but then one of her docs said, “We’ve seen this before,” and they started sepsis protocol (a typical IVIG reaction might not occur for three days). When the bolus didn’t help, they called 911. Within maybe five minutes of the initial symptoms, the paramedics were at our chair. The nurses all worked together to put in a new peripheral line so they could draw blood to culture -to grow and see if she had an infection. Then we were wheeled onto the ambulance and driven (all the way) across the street to the ER.

Once there she was given antibiotics, Tylenol to bring the fever down, and two more boluses were pushed within one hour. Thankfully this all had the effect they were hoping for. Her blood pressure came back into the normal range and her fever subsided -for the most part; we had to help the fever a bit with cold cloths, but it eventually came back down. She also had a chest xray and nasal swab. They wanted to check for any possible infection.

She was really tired and fell asleep quickly. There is no cell reception in the ER, so I sent out an SOS email, and everyone scrambled to make arrangements. Jason had to stay home with Sophia, who had a little bug (not related to Emily), so my mom and Aunt Gaby came to sit with me. She was definitely being admitted, but they hadn’t decided yet if she should go to the general Peds floor or if she needed to go to ICU. Her heart rate was still really high, and they needed it to come down.

Around 11:00 pm, she had another episode of fever and chills with elevated heart rate, but this time Tylenol fixed everything quickly, and it was decided she didn’t need the extra care from ICU and could go to the general Peds floor.

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Heading upstairs

As we waited in the ER, and then as we got settled into our room on Davis 7, some of our nurses stopped by to say hi. Of course no one wanted to see us in that condition, but it was still good to see them again.

Throughout the night Emily’s heart rate continued to drop back into the normal range again, and she didn’t have any more fevers or chills. By Friday morning she was already feeling better -tired and puny, but better. Her surgeons stopped in to check on her, then the Hem/Onc team came by to share their thoughts.

That’s when we first heard about the spot on her lungs and the possibility that it might be a fungal infection. But after 24 hours (Friday evening) of negative blood cultures, and no more symptoms, the thoughts switched back to an allergic reaction.

There really is no way to definitely know what the spot on her lungs is without invasive procedures, and those bring their own set of risks, including a greater risk of cancer development. So because the cultures remained negative (by Saturday night they were negative for 48 hours), she remained afebrile for at least 24 hours, all her vital signs returned to normal, and because the symptoms started right after receiving IVIG, which is allergenic, and she had had no signs of a fungal infection prior to Thursday (like a cough), her doctors were comfortable sending her home today. When we see Dr. Ducore in a couple weeks, we’ll discuss the possibility of doing another chest xray in a few months to check on that spot.

Emily was thrilled to head home. She wore jewelry, pajamas, and gladiator sandals -on the wrong feet -and carried her baby in matching pj’s, and walked out on her own two feet.

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Thank you all for your prayers, compassionate words, and meals! Maybe now we really are done with all of this …

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.