Tag Archives: U.C. Davis Medical Center

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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LLS Girl of the Year

Emily's cousins discovered a poster with her picture on it at their neighborhood coffee shop!

Emily’s cousins discovered a poster with her picture on it at their neighborhood coffee shop!

You’ve probably heard of Team in Training and Light the Night, right? Team in Training trains people to run marathons and helps them fund raise (like the Nike Half that my sister Jenn ran in in San Francisco in October 2012), and Light the Night is a really neat fundraiser/walk held each year where people walk with different color balloons based on their journey with cancer (we participated in this one). Both of these events are fundraisers for the Leukemia and Lymphoma Society (LLS). LLS has a moto: Someday is today. And their mission is to raise awareness and money to help find the cure for blood cancers.

The third big fundraiser that LLS runs each year is called the Man & Woman (& Students!) of the Year Campaign. Men and women from the community race against each other in a competition to raise the most money for LLS. Each candidate is nominated by the nominating committee, and they commit to ten weeks of super-intense fundraising. At the end of the ten week period a large gala is held, along with a silent and live auction, and the winner of each category is announced. Students are also allowed to campaign, and they run in teams of two.

Most of the candidates have a connection to blood cancer -either they or someone they love has gone through it. But each year a Boy and Girl of the Year are chosen to serve as motivation and inspiration throughout the campaign. They are local blood cancer survivors, and they join the fundraising efforts to share their stories and help the candidates in their endeavors. The Boy & Girl do not have to fund raise themselves.

This year Emily was nominated as the Girl of the Year, and we have been so blessed to meet and help the candidates with their events. Over and over gain -since Emily was diagnosed -I have been blown away by the generosity and care that people have toward others. These men, women, and students spend a huge amount of time on their campaigns -in addition to their regular jobs/studies. They each have a team behind them, but I still don’t know how they do it. It is a huge commitment.

To help with the campaigns (though, really, we aren’t doing much), we filmed a video of Emily’s story and we attend any of the fundraising events that we are invited to. We’ve shared her story with the candidates, and we’re rooting for them! In the end, regardless of who wins, all the money is going to the LLS, so we’re all winners (cliche, I know).

Here is the video:

And here are pictures from some of the events we’ve attended so far:

Emily with candidate Jason Silva at his Fishing Derby & BBQ

Emily with candidate Jason Silva at his Fishing Derby & BBQ

Jason Silva's poster

Jason Silva’s poster

With candidates Ronnie Cobb and Nikki Hurst at their Gospel Choir event.

With candidates Ronnie Cobb and Nikki Hurst at their Gospel Choir event.

With Jennifer Pear, the LLS Campaign Director.

With Jennifer Pear, the LLS Campaign Director.

The Boy of the Year is a sweet, sweet 11 year old who just entered his Maintenance Phase of treatment last November. Out of all the boys and girls in the Sacramento area who could have been chosen for these roles, both Garrett and Emily are being treated at UCD by Dr. Ducore -it’s a fun coincidence.

We’re already halfway through the ten week campaign, but I’ll update with photos as we can.

 

 

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!

Down the Road …

Recently our local newspaper, the Sacramento Bee, published an article spotlighting the long-term side effects of cancer treatment.

Childhood Cancer Survivors

In the article, Emily’s own Nurse Practitioner from U.C. Davis, Kay Wells, discussed the risks pediatric cancer patients may face down the road.

When children are diagnosed with cancer, families fight so hard for them to make it; their lives are a gift. But the miraculous treatments that save childhood cancer patients can also, years after the fact, make them susceptible to secondary cancers and other health problems, a range of illnesses known as late effects. Now researchers are learning that those late effects can include not only the early development of the illnesses of old age but also the premature onset of frailty – the kind of physical weakness, exhaustion and low muscle mass seen more commonly in people of advanced age.

In fact, research shows that

80 percent of adults who beat cancer as kids have a chronic, perhaps life-threatening health condition by the time they reach age 45. More than half have heart abnormalities by that age. Another 65 percent have impaired lung function, and 48 percent have memory impairment.

Those are dismal words to read. But it’s not the first time we’ve heard them. When Emily was initially diagnosed, she was given a 90%-99% 5-year EFS prognosis. That dropped to 65%-80% after her CNS-2 (spinal fluid leukemia) was discovered and she didn’t respond to the Induction Phase as hoped. Relatively speaking, those are still good odds, especially when you factor into account all the prayer being poured out over Emily everyday. We are still expecting a 100% cure. But something that’s weighed on my mind ever since first hearing those statistics prompted me to ask Kay Wells about them earlier this year.

I asked, “What does 5-year EFS really mean?” EFS stands for Event-Free Survival. Tack on the “5-year” and what you’ve got is a 65%-80% chance that Emily will remain event-free (no death, relapse, or development of a secondary cancer) for 5 years. So the next question, “Well, what about after 5 years? What then?” Because I’ve looked at the statistics online, I’ve studied all the published journals and clinical trials and research I can find, and from what I can understand, the numbers don’t get better -they get worse.

Graph depicting overall survival of childhood ALL patients treated at St. Jude between 1962-2007

Graph depicting overall survival of childhood ALL patients treated at St. Jude between 1962-2007

Overall survival graph This graph shows the wonderful advancements in treatment, because you can see the vast improvement of cure-rate from 1962, when only 10% of patients lived beyond one year, to the present, when more than 90% of patients live five years. However, if you look at the top line, the thick black one, which showcases more recent patients (2000-2007), you’ll see that the overall survival rate, while better, still declines with time.

This is what was discouraging me earlier this year that I had to ask Kay about. She was very straightforward with me and said that yes, Emily will most likely face challenges down the road. However, we won’t know what they are until we get there, so there’s no use worrying now. She reminded me that we’re still trying to get Emily through treatment and to focus on that. She, and Emily’s team of doctors and nurses, are monitoring Emily closely to watch for any signs of problems -not just a relapse, but cognitive delays, growth delays, heart, lung, and liver problems, and so on. And they will continue monitoring her for the rest of her life.

Right now we have a little girl, a lovely, blessed, spirited little girl. We can snuggle her and tickle her and hug and kiss her. We can hear her laugh and sing and sass back. We are thankful for every single moment with her, and we cannot waste one second worrying about what the future may, or may not, bring. We will just keep praying. Praying she will be free of leukemia and suffer no long-term side effects. Because I know our God is bigger than statistics.

Would you pray with us for Emily’s long-term health? 

Emily Love Softball Invitational

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I think it’s been mentioned here before that, since Emily’s diagnosis 20 months ago, Jason has been working with the Children’s Miracle Network to help raise funds for the Children’s Hospital. He was voted onto the CMN Board of Directors last year, and he works very hard at giving back to the people and hospital that have given so much to us.
This weekend, Saturday October 26th, he’s hosting the first ever Emily Love Softball Invitational to benefit CMN and the hospital. Co-ed teams will play in an all-day tournament, there will be activities for the kids, and pizza will be available. The Invitational will take place at Bartholomew Sports Park in Elk Grove. If you live in the area, come on out and join in the fun! Games begin at 8:00 a.m., and activities will run until the Championship Game begins at 5:00 p.m. Kids gain access to all the activities for $5.
Jason is playing in the tournament, and Emily and the kids and I will be there all (or most of the) day. We hope to see you there!

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Photos & Videos Galore

I have a backlog of pictures and short video clips I’ve been wanting to share from the last month, so I’m going to squeeze them all into this post. I’m sorry in advance if it takes a while to load on your computer.

Emily has been doing really well. Her daily chemo has been bumped back up to 100% dosage after dropping it to 50% in May, and her counts seem to be holding at a good level. The monthly IGG transfusions she gets are nothing short of miraculous. Her siblings have all been sick over the past few months with a stomach bug and this yucky high fever + aches + cough virus, but Emily hasn’t caught anything! What a difference from before the transfusions when she got sick simply by breathing.

Emily’s walking is unbalanced and ungainly, and while she doesn’t let that stop her most of the time, quite often her legs get tired and she wants to be carried. It’s been seven weeks since her cast was removed, and the pain and gimpiness could be that her leg is still healing, but realistically I think it’s just something we’ll deal with until she’s done receiving Vincristine next Summer.

The week of Pentamadine, Vincristine, Methotrexate, spinal tap, & steroids each month are still a bit rough, but I think we’ve all grown accustomed to the routine. And each Wednesday, after Emily receives her bolus of oral Methotrexate on Tuesday night, she wakes up pukey and ill. But it passes quickly. It’s almost hard to remember what life was like at this time last year! Cancer is always in the back of my mind, but most days I don’t consciously think about it.

Onto the pictures!

Off to SIBS Camp!

Off to SIBS Camp!

Welcoming the boys home from SIBS Camp, which they LOVED!

Welcoming the boys home from SIBS Camp, which they LOVED!

Welcome home boys (with some friends)

Welcome home boys (with some friends)

So Emily came up with her own way of swinging. Every time we walk out the front door she has to take a swing or two.

Jason brought his work home a couple weeks ago, and the girls were absolutely delighted to have him as an audience!

What do you mean you can't concentrate?

What do you mean you can’t concentrate?

Sophia eventually left him alone. Emily was a bit more stubborn.

Sophia eventually left him alone. Emily was a bit more stubborn.

Speaking of stubborn …

She doesn't care who sees her throwing a fit.

She doesn’t care who sees her throwing a fit.

The boys were invited to a soccer game at Raley Field courtesy of the UC Davis Hospital and the Children’s Miracle Network. After watching the professional Sacramento team play the San Jose Earthquakes, the boys got to usher two Professional International teams onto the field. They’re the three on the far right.

Norway vs. Mexico at Raley Field

Norway vs. Mexico at Raley Field

Last week my parents surprised the kids and I with a trip to Pier 39 in San Francisco, complete with a train ride. We all had so much fun!

Waiting for the train

Waiting for the train


On the wharf

On the wharf


Emily wasn't hesitant to touch the sea creatures at all!

Emily wasn’t hesitant to touch the sea creatures at all!


When she didn't get what she wanted, she threw a silent protest. Even the people walking by had to laugh.

When she didn’t get what she wanted, she threw a silent protest. Even the people walking by had to laugh.

Last, I wanted to share with you our view when we’re in the Pediatric Infusion Center in the UC Davis Cancer Center. It’s really quite peaceful.

View from our chair in the Infusion Room

View from our chair in the Infusion Room

When the new Infusion Center was built last Fall, donors contributed by buying Infusion Chairs for the patients. In return, they could have their name on the wall. The Children’s Miracle Network donated a chair in Emily’s name, so now her name is on the wall.

The Love Chair

The Love Chair

Tigger went thud —

Emily, at Adam's Little League game, sporting her new cast, signed by all of the nurses at the Cancer Center this morning!

Emily, at Adam’s Little League game, sporting her new cast, signed by all of the nurses at the Cancer Center this morning!

Emily has been feeling really good of late – you would never guess, most of the time, that she’s on daily chemo.  She’s been a mini-Tigger on springs, bouncing and climbing and jumping – and it’s been awesome to watch her.  Unfortunately, Tigger sprung too much yesterday and she now has a cast on her leg.

As Chrissie and Emily were leaving the Infusion Room at the U.C. Davis Cancer Center yesterday, after an antibiotic infusion in preparation for her spinal tap today, Emily was jumping up-and-down on some foot-high, decorative concrete blocks that were outside.  Chrissie was holding her hand so that Emily wasn’t putting her full weight on her legs when she jumped but when Emily jumped down onto the grass at the last block, she crumpled to the ground, crying.  At first, Chrissie figured she’d probably just sprained her ankle, because who immediately thinks that their kid just broke their leg(?!), and so she took her home, iced it, and put her down for her nap; however, when Emily woke up, she wouldn’t put any weight on her leg.  There was no swelling or bruising and Emily wasn’t crying but Chrissie was concerned and so we – Chrissie and Grammie – took her to an Urgent Care. The doctor there advised us to take  Emily to the U.C. Davis ER since it had a childrens’ hospital (the Urgent Care wasn’t affiliated with one) and Emily was already being treated there for leukemia.  Unfortunately, we ended up there on one of their busiest nights.

Emily, on her way to the hospital, and enjoying the ride.  She kept saying she was glad to be going to "her hospital" and to see "my doctors."

Emily, on her way to the hospital, and enjoying the ride. She kept saying she was glad to be going to “my hospital” and to see “my doctors.”

Waiting in the Peds Waiting Room.  Emily went from giggling, silly punch-drunk from lack of sleep to intermittently lying down.

Waiting in the Peds Waiting Room. Emily went from giggling, silly punch-drunk from lack of sleep to intermittently lying down.

We got to U.C. Davis about 8:00 pm – and waited in their Pediatrics Waiting room for five hours(!), before finally being ushered into the Peds ER at 1:00 am.  We were in the waiting room long enough for our group to bond with another family who had brought in their two-year-old, who had also fallen – and we were sharing snacks and cell phone videos and I figured pretty soon we’d be inviting each other over for dinners at home!  All the while, Emily was really guarding her left lower leg – not crying but not moving it either.

We're now in the Pediatrics ER room and Emily is still clowning around and silly!  She has the most awesome spirit ---

We’re now in the Pediatrics ER room and Emily is still clowning around and silly! She has the most awesome spirit –

After we got into the ER room and Emily’s leg was checked, they gave her a dose of Tylenol so that they’d be able to straighten her leg for an xray.  Pretty soon, between the Tylenol and the general lack of sleep, she slept through the rest of the ER visit.  Too bad Momma and Grammie couldn’t do the same. Turned out she has a Buckle Fracture of the fibula and tibia – which is a version of a greenstick fracture, which is fairly common in kids.  Their bones are soft so when they break, they break more like a green stick, which bends and doesn’t break all the way through, rather than a dry stick (like an adult’s bone), which snaps all the way across.  Her tibia sort of splintered while her fibula did more of a buckle, where it bent several ways.  Her Oncologist told Chrissie this morning that it most likely occurred because Emily’s bones are weaker due to all of the chemo and steroids.

This speaks for itself ---

This speaks for itself —

Emily slept through the whole casting process.

Emily slept through the whole casting process–

 --- and she continued to sleep afterwards.

— and she continued to sleep afterwards.

Chrissie and I walked out of the ER after 4 am and arrived at Chrissie’s house just before 5 am. Emily slept the whole way home and then nursed and went to bed.  Chrissie got an hour-and-a-half of sleep before getting up, driving her kids to her sister-in-law’s, and then taking Emily back to the Med Center for her already-scheduled spinal tap and chemo infusion.  After picking up her kids this afternoon, she managed another hour-and-a-half of sleep, then picked up Jason from his car pool, they all took Ethan to batting practice, then everyone went to Adam’s Little League game.  Hopefully, they will all get some sleep tonight.

Going home ---

Going home —

Emily is handling it well, so far.  She held court at Adam’s Little League game with her leg spread out straight while playing a game with the other kids.  Chrissie will keep any pain covered for now with some prescribed pain medication but the cast itself will take away most of the pain.  The Ortho doctor who put on the cast said that kids’ bones heal really quickly and that the fibula will straighten out as it heals.  Emily will have the cast for a few weeks and will be followed by the Pediatric Fracture Clinic at U.C. Davis.  Enough cannot be said for the care and the caring that U.C. Davis has given to Emily and for the Childrens’ Miracle Network which is supporting the Cancer Center and allowing Emily’s treatments and care to be financially covered.  Please support them anytime you get the chance.  Also, of course, continue to pray for this family —

Happy Valentine’s Day!

Happy Valentines Day!

Valentine’s Day in Davis 7

Just like last year, our Valentine’s Day was spent in the hospital, but this time only as visitors. Sophia, Emily, and I visited the Davis 7 Playroom this morning to participate in some fun valentine activities with the Children’s Miracle Network (which was extra exciting for both girls, since we’re never allowed in there when Em is admitted!).
Emily is doing really, really well. Her ANC/immune system has been a bit low the past two weeks, so some of her treatments have been put on hold until it rises, but you couldn’t tell unless you knew! She is spunky, active, rambunctious, and full of life … basically, she’s back to her normal self!
Her hair is coming back in thick, wavy, and fast! And she’s totally loving the Mohawk, asking for it every day. We even sprayed on some pink, and she’s already planning on wearing it to church next week. That’s our Stitch!

We’re out —- !

Emily, all dressed up and ready to head home!

Emily, all dressed up and ready to head home!

Emily’s IgG infusion was finished, her Broviac lines were flushed with heparin, and we were able to walk out of the ICU about 4:30 Sunday afternoon.  It felt sooooo good to be able to breathe without a mask over our faces!  Almost the best part of going home! Almost —-

We are hoping – and praying – that this IgG infusion will start Emily on the road of fewer hospital stays. We offer a huge Thank You to her nurses in the ICU, who had to listen to Emily’s tantrums several times, especially during the last 24 hours, as she started to feel a little better and a little less willing to stay confined to a bed and monitors and her room.  We know they are well aware of sick children and how they can act, but they showed a lot of patience in helping us care for Emily.  Thank you — you made our stay more pleasant.