Tag Archives: child life team

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.

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More Beads of Courage

It’s been over a year since we’ve shared Emily’s Beads of Courage, so here they are!

Beads of Courage

Beads of Courage

These are current as of November 2013, so we’re missing about four months worth. We have close to 800. I can’t tell you how much Emily loves these! She often pulls them out and (ahem) “organizes” them. I’ve tried to keep them in the order of events as they happened, but I somewhat gave up toward the end so she can play with them 🙂

A year ago Emily and I were able to travel to the Northern California Costco Regional Managers meeting to share her story. They do their big fundraiser for the Children’s Miracle Network every May, so we got to help pump the managers up, so they could in turn pump their employees up, so they could in turn sell more of those red and yellow CMN balloons 🙂 All of the proceeds of those balloon sales go to CMN and (here in our area) to the UC Davis Children’s Hospital. The funds pay for things the hospital can’t afford, such as specialized equipment, research, the Child Life program, and the Beads of Courage (plus more). Just yesterday, all five kids and I got to speak to the same Costco managers and share an update. They were so sweet to have us, and we were so honored to be able to help give back. We brought her beads, so they could see how important their efforts are to families like ours.

(We’ve also been lucky enough to share our story with Sam’s Club and Walmart!)

I forgot to include something for a size reference in the photo above, but those beads stretch clear across a large conference room. I am so thankful for such a neat program available to Emily!

Build-A-Bear for the Kids!

It's Build-A-bear Day!!

It’s Build-A-Bear Day!!

We made it happen!! Thank you all SO, SO, SO much!! When we posted two weeks ago here , asking for help to get our Build-A-Bear idea back on its feet, you came through big time! In less than 24 hours we were 2/3 of the way to our goal, and within a week we had exceeded it!

So today, Friday Feb. 7, 2014 Jason and the Children’s Miracle Network, together with the manager and workers of our local Roseville Build-A-Bear store, are in the UC Davis Children’s Hospital Playroom putting together bears with the patients! Jason is posting pictures to his Facebook page, so I’m borrowing them and posting them here as they come in (all children shown have signed a consent).

This date was picked because February is Heart Month at the hospital, and the focus is on congenital heart disease and heart health. The B-A-B staff have set up shop in the playroom, and some of the Pediatric Heart Surgeons and Med Team have joined them to sew up the hearts. So fun!

Build-A-Bear staff

Build-A-Bear staff

Joy waiting to be spread!

Joy waiting to be spread!

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Hearts ready to go through the Heart Ceremony and be sewn into each animal.

Surgeon statioon set up!

Surgeon station set up!

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Med Students helped sew the hearts in

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I think this is good practice!

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Tucking her heart in

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So many choices!

Going through the Heart Ceremony

Going through the Heart Ceremony

Making a wish and kissing their hearts

Making a wish and kissing their hearts

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Even the kids who couldn't make it to the playroom got to participate.

Even the kids who couldn’t make it to the playroom got to participate.

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News crews showed up.

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Jason and Trisha with the Build-A-Bear team

Headed upstairs to the PICU!

Headed upstairs to the PICU!

Jason said the day went better than hoped and everyone was so pleased. He also said there were more than a few tears throughout the day, mostly from the parents who were so appreciative of the gesture. He had the chance to explain how the idea came about and how the funds were raised, and many of the parents asked him to tell all of you thank you! They were so touched.

The last thing I have to share is a video (shared with permission) of one PICU family going through the Heart Ceremony for their son, Roman, who could not do it himself.

**Thank you all SO much for helping us make this happen! I think this is my absolute favorite thing we’ve been a part of since Emily’s diagnosis two years ago.**

An article featured on the UCD website: http://www.ucdmc.ucdavis.edu/welcome/features/2013-2014/02/20140214_children_bears.html

Can you help a Pediatric Patient?

**UPDATED** We did it!

Do you remember this post, when Grammie shared that Jason and I got to help the Children’s Miracle Network wrap gifts at the local mall, and the Build-A-Bear store right across the way gave each of our children their own bear?

Build-A-Bear!

Build-A-Bear!

Well it was the first time I had ever been to Build-A-Bear and seen the process of building a bear, and I was moved to tears! The manager of the store led each of the kids through the steps of picking out an animal to stuff, picking out characteristics their animal would posses, and then adding the heart. When they added their hearts, the manager performed a ceremony for each one. She had them take their hearts and rub them on their backs while saying, “She’s(he’s) always got my back,” then they rubbed the hearts on their foreheads so their animal would be intelligent, jumped up and down with them so their animals would have health and energy, laughed with them so their animals would be happy and playful, rubbed them on their own hearts so their animal would be full of love, and finally they kissed the hearts so their animal would know how much they are loved. There were more things that I can’t remember, but I couldn’t hold back the tears! I thought it was the coolest thing! And right then I knew we had to make this happen for all the kids in the hospital.

So we asked the manager if it was even a feasible thing -to bring the process to the hospital -and she was as excited as we were! Jason jumped on the job right away and secured a sponsor. Partnering with the Child Life Program, we decided to bring Build-A-Bear to the hospital in February, because it’s Heart Disease Awareness Month. The sponsor agreed to donate enough money to provide a bear for each patient in the hospital on February 7th -that includes the General Peds Floor and the Peds ICU.

Build-A-Bear will bring a variety of partially-stuffed animals and accessories to the Playroom, and all the patients can pick one out and go through the process of building their own bear! Patients that can’t make it to the playroom will have the supplies and heart ceremony brought to them!

We have been so excited about this, but just today our sponsor pulled out. We could throw in the towel and give up, but we decided to turn to our friends for help. Build-A-Bear has given us a significant discount, but we still need to raise $1800 by Feb 2, 2014 to make this happen.

Jason set up a page through crowdtilt.com, to make it easy for anyone to donate. $30 will purchase one animal, but of course every little bit will help, even if it’s $1! Will you help us make this happen? If so, you can click the link below to go to the donate page. We’ll of course keep everyone updated as things progress! Thank you!

Sponsor a Build-A-Bear! 

Build-a-Bear for a Peds Patient!

Build-a-Bear for a Peds Patient!

We DO like the Port after all!

Well, just like everyone told me, Emily is getting used to the port accesses, and we are liking it much better! She’s had her port accessed (that means a needle was inserted) a few times since my last post a few weeks ago, and each time seems to go a little easier than the last. It’s not roses and rainbows like the Broviac was, but it is better. The Child Life Specialist at UCD is phenomenal and such a help in keeping Emily somewhat cheerfully distracted while being accessed. And the nurses are so patient. Emily has said over and over that it doesn’t hurt a lot, though it does hurt a little, but it’s mostly scary. So we’re working on making it less scary. One thing we changed is the process of applying her EMLA cream (the numbing cream we put on her skin about an hour before she’s poked). I had been applying the cream and putting a piece of Tagederm (clear medical tape) over it to keep it in place. But she HATES that stuff. Another Cancer Kid Mom gave me the suggestion of using Press ‘n Seal instead. I didn’t think it would work, because I didn’t think it would stick to her skin, but it does! It’s like magic! The stuff sticks just enough to keep the cream in place, but it also peels off super easily and doesn’t hurt Emily’s sensitive skin one bit. Yay!! Yay for the encouragement of other moms going through the same thing. So with the accesses getting easier to bear, and the freedom of being tube-free, I am finally feeling good about our decision to switch from Broviac to Port.

Overall Emily has been doing great. She is healthy and growing well. We had been concerned about her walking -if you remember, she had stopped walking for about four months when first sick, then the Vincristine caused joint pain and neuropothy which caused her to walk funny, then she broke her leg … -but she seems to be walking quite normal now. Her feet still sort of slap the floor a bit awkwardly sometimes, but I think it’s working itself on its own, which means she won’t need physical therapy. She still receives IVIG transfusions each month, and I think that’s the reason she hasn’t been sick this year (besides the recent septic shock episode, but that would have happened regardless of how healthy her immune system was). Actually, all five of our children have been blessedly healthy this year, and we’re praying for more of the same this winter season! One odd thing about this Maintenance stage is that Emily’s hair started to grow in very thick and curly earlier this year. But sometime this summer parts of her head seemed to lose hair. She doesn’t have bald patches, but rather very thin and fuzzy patches. She has long strands of curls on the sides of her head and almost no hair in the back. Which actually works out very well, because she can’t see the back and has no idea! The other day she was preening in front of the mirror, pulling on her freshly washed hair, excitedly remarking that it is now as long as Sophia’s hair. Not quite, but in her mind it’s perfect.

Long enough for pigtails!

Long enough for pigtails!

Emily has a port – and it’s purple, of course!

Ready to go to the hospital!

Ready to go to the hospital!

On Thursday, Aug. 29th, Emily had the surgery to get her new port, which now replaces her previous Broviac catheter. As with the Broviac, the port will be used to give Emily IV fluids, chemo, and antibiotics and will also be used to draw labs, thus saving her from repeated IV sticks. The port was placed in her lower chest, just under the skin, and it has a catheter which threads under the skin and into the large, subclavian vein that is above her collarbone.

Playing "paper" dolls with Momma while waiting for surgery.

Playing “paper” dolls with Momma while waiting for surgery.

Emily left the house at 7:00 am, dressed as usual in her girly finery – fancy white top, new pink tutu (have to have a new one for surgery!), Egyptian-style sandals, pink polish and a pink rose headband. You would not believe how many nurses peeked into Emily’s pre-surgery waiting room to view whatever glittery, frilly clothes and baubles she had worn this time! Apparently, she is known for her fashion statements! You can never start too young — just sayin’!

Checking out a port.

Checking out a port.

It's purple!

It’s purple!

One of the Child Life Specialists brought her toys to occupy her during the two hours that we – Emily, Chrissie, and Grammie/me – waited prior to the surgery, and Chrissie and Emily had quite a story made up with their paper dolls. Also during that time, vitals had to be checked, paperwork had to be done, and visits had to be made by the doctors and anesthesiologist. The Child Life Specialist also brought in a port – purple, of course(!) – so that we could see what it would look like once inside of Emily. Emily was very interested and even more thrilled that it would be purple! Enough cannot be said about how much the Child Life Specialists do to help ease the wait and the anxiety and questions for parents and for the children.

Pre-surgery sleep.

Pre-surgery sleep.

Once it got closer to the surgery time, Emily was given some Valium – by way of a syringe that Chrissie squirted into Emily’s mouth – so that she would be relaxed when they wheeled her into the surgery room. Emily repeatedly asked if it was time to go for her ride – showing how many many times she has done the gurney ride down the hallway. To her, it’s just part of the process and it’s a kudo to the hospital staff that it isn’t a scary thing for her. Once inside the surgery room, she was given some gas with a mask and after she was completely asleep, they inserted a peripheral IV, in her hand, so that they could give her fluids and draw her weekly labs during the surgery. It was planned that way so that she wouldn’t have any needle sticks when she was awake. Another praise for the staff for thinking ahead for her.

Emily's new port - otherwise known as "her lump!"

Emily’s new port!

During her surgery, Chrissie and I went for some much-needed coffee. Well, I got coffee – Chrissie got Ibuprofen, to help with her very sore jaw, after having three wisdom teeth pulled on Monday. Once Emily was back from surgery, Chrissie and I went back into the pre-surgery/recovery room and waited for Emily to wake up. We also got our first look at her new port. The first thing she asked for as she was waking up was her pacifier. A few minutes later, she was asking for “ketchup and potato chips and chicken nuggets and French fries!”

Dressed to go - but still half asleep - but always a fashion-plate!

Dressed to go – still half asleep, but always a fashionista!

Realizing that her chest is a bit sore.

Realizing that her chest is a bit sore.

After picking up her brothers and sister from the friend who had been watching them all day, we drove through a McDonalds drive-thru, then home. Emily merely looked at her requested food for awhile, then eventually ended up eating most of it. By the end of the afternoon, both Emily and Momma were sitting on the couch, with ice packs on their chest and cheek, respectively.

Food! - just not sure yet if she really wants to eat it.

Food! – just not sure yet if she really wants to eat it.

The end of the day ---

The end of the day —

The next morning, Emily was still a little sore but feeling so much better that she went to everyone in the house, saying “I can walk! Look, I can walk!” and doing little dances. Apparently, she had felt so bad the day before that feeling good enough to be able to get up and walk just had to be announced! Her chest is feeling even better today – and Momma’s face is still a little swollen and sore but she says she is better, too.

Thank you to everyone who helped with prayers and child care – and to everyone at U.C. Davis for taking such good care of Emily —

Stitch – 2: Methotrexate – 0

Emily did it again! In for her second round of high-dose Methotrexate, Emily cleared the toxic drug from her system in record time!

The Methotrexate is staying true to its long list of side-effects – causing painful mouth sores and burns on Emily’s bum – but thankfully it has not yet weakened her body to the point it cannot flush the drug out of her system as quickly as needed. Emily was released from the hospital at lunchtime Friday, just in time to join Momma at the rest of her Classical Conversations Conference.

The Conference brought some new logistical challenges to this hospital stay as Christina needed to be away from the hospital from 8am to 5pm both Thursday and Friday. With the help of family, the Child Life Team at the hospital, some fun toys, and Lassie, Emily did fairly well in her mother’s absence. It takes so much to replace one Mommy!

Meanwhile, Auntie Jennifer has been preparing for a demonstration of her own resilience. Jennifer signed up to run the Nike Half-marathon on behalf of the Leukemia & Lymphoma Society and in honor of Emily. For several months, she has been training daily as well as raising funds for research into a cure for the disease Emily is bravely fighting everyday.

We will share more about the marathon soon, as well as other friends who are also running in Emily’s honor, and some other fundraising being done by family to help fund a cure for cancer. In the meantime, though, we have a great opportunity to raise awareness of Emily’s brave fight to the L&LS and racing communities.

If we raise just $500 in Emily’s name within the next few days, “Emily Anne Love” will be printed on the racing jerseys of the Central Valley chapter of the Leukemia & Lymphoma Society throughout the fall racing season! That means every L&LS runner would bear the name of Stitch as they cross the finish line and help raise awareness and funds for critical research needed to get our Emily healthy again.

If you can help, every dollar will help get us to our goal, check out Jennifer’s fundraising page and click DONATE NOW on the right. Make sure to write FOR EMILY LOVE in the designated comment area to ensure your donation goes toward making Emily an Honoree Sponsor.

Thank you for your prayers and support this past week. We are thrilled Emily is continuing to handle the Methotrexate so well. Just two more doses to go!

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!

A brief Update

Despite normal temperatures and negative cultures, Emily wasn’t able to go home this weekend as we had hoped. The pediatric nutritionist is concerned about her diet and the doctors want her ANC higher.

Emily’s previous enthusiasm for food has gone by the wayside and while she still asks for food frequently, she seldom eats it. The possiblity of using a feeding tube to provide nutrition has been suggested and the family is waiting to hear the opinion of Emily’s lead doctor.

Grandpa Tom gets Emily to eat some cheerios

Emily’s ANC was 30 on Saturday and made a very small increase to 40 on Sunday. Unfortunately, the doctors want it above 250 before releasing her for home so we’ve got a ways to go.

Tomorrow is Emily’s second birthday and she has already begun celebrating a bit early! The Child Life Team came today to discuss plans for a small celebration tomorrow after her morning spinal tap surgery and we’re hoping the real birthday treat will be getting to go home to her family!

Emily shows off her new Twilight Turtle Planetarium from the Howells!

Thank you to everyone for your continued prayers and support. And a special BIG thank you for everyone providing meals and babysitting for the Love family!