Monthly Archives: January 2014

She’s doing better than great!

Since the stomach bug passed two weeks ago, Emily has progressively gotten better and better, and now she’s feeling completely healthy and normal! She’s regained her appetite and nearly eaten us out of house and home -she gained back the three pounds lost and even gained one more pound! She’s been asking for food constantly; it’s as if she’s been on steroids for the last two weeks. Plus, helping her weight gain along is this organic kids nutrition shake I discovered at our local Costco, Orgain Healthy Kids (developed by a doctor/cancer survivor!). I like to make green smoothies at home, and usually Emily drinks them, but a new “chocolate milk” was just what she needed to add some good minerals and vitamins back into her diet. 

Yummy and nutritional!

Yummy and nutritional!

I don’t think I mentioned it here, but Emily had some trouble with her at-home chemo for the first three weeks of December -it made her immune system very weak -so it was put on hold for that time. Thankfully she was able to restart the day after Christmas at a 50% dose, and it looks like she’ll be able to go up in dosage soon, since her immune system has been very strong recently. While I sort of like the idea of her being off chemo, it’s also a relief to be back on. I hate chemo. I hate poison coursing through her body. But I know this poison is killing any last remaining cancer cells, and I want it to do its job completely. I don’t want one single cancer cell left hiding somewhere, waiting to reappear when her treatment is done. I came across this short video the other day that does a good job of explaining conventional treatment.

After Emily was diagnosed, Jason and I did a lot of searching for alternative treatments. And there is a LOT of info out there. But it didn’t take us long to decide that, even though chemo sucks -and it kills her healthy cells along with the cancer cells -and it doesn’t always work -and there are a lot of risks, even long-term risks -it’s the most proven method of treatment. You’ve heard this many times, but we are grateful for the hospital and team of medical professionals she’s fortunate enough to have. We have a lot of trust in them, and of course, ultimately we are trusting her health to God. So I’m glad to be back on track with her treatment!

Speaking of on track, we are actually in the countdown to completion! Emily is scheduled to finish her treatment regimen at the end of June, 2014! I’m not counting days yet, but it’s cool to see the finish line 🙂

And just for fun, here’s a 2 minute clip of Emily on Friday evening. It was about 6:30 pm, and she had spent the entire day at the hospital getting her spinal tap with chemo, her monthly infusion of chemo, and her monthly infusion of antibiotic. Yet she was full of energy!!

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!

— Heading Home! —

Heading home!

Heading home!

Thank you for your prayers — they were answered! When Chrissie took Emily to the ER tonight, Emily was too weak to walk. After being given IV fluids plus IV potassium, Emily’s potassium labs rose from 2.5 to 3.6. Her whole demeanor changed – back came the feisty, spunky little girl that is Emily’s normal self. She instructed both Momma and I that we were all going to put together a puzzle “as a team!” And she again has some plumpness in her arms and legs. And, best of all, we realized as we were walking out of the ER about 12:45 am this morning that this is the first time since Emily started this long journey that instead of being admitted to the hospital from the ER, she walked – well, was carried – out of the ER and got to go home!

Thank you all for your prayers – and for reading this blog so ridiculously late at night. Again, you are our security blanket —

— requesting prayers —

Chrissie wrote a post late Saturday about how Emily and Sophie had both come down with a gastrointestinal virus – lots of throwing up and diarrhea. Sophie is now 100% better. Emily seemed to be getting better
Saturday, but she never perked back up like Sophia did. The Home Health Nurse came out this morning – her regular visit – and drew labs, which came back late today with a critically low potassium level (2.5, while the normal for a childchild is 3.4-4.4). Chrissie was told to bring Emily in to the ER to get some IV hydration. The ER trip was because it was late in the day and the Infusion Room was closed, rather than because it was a life or death situation. Chrissie just emailed me that Emily’s labs were redrawn in the ER and that her potassium again came back low so they are getting IV potassium from the pharmacy to give to her now.

At this point, we are thinking they will rehydrate Emily and as soon as her labs come back with a better level, she and Chrissie will return home. Both Chrissie and I, however, have go-bags in our vehicles! I/Grammie am babysitting the other children, who are now asleep, but I will go to the ER once Jason returns home from school and give Chrissie some company in the ER. We will then see how it goes from there.

So, please pray for the whole family – and pray that Emily’s labs will come back up without having to be hospitalized. Her other labs have been good but she has lost weight that she didn’t have extra to lose and she was pretty weak tonight.

We thank you —

Sick … but no hospital stay!

Two sweet, sick little girls

Two sweet, sick little girls

This is what the girls looked like most of this week. After a super fun Christmas and a 6th Birthday Party for Sophia on Saturday, Sophia came down with a stomach bug Monday night. A healthy Emily helped ring in the New Year Tuesday night, but then she woke up about 3 am with the same bug. And they spent the next few days on my bed, on the couch, and in the bathroom. At one point, after I took Sophie to the bathroom then went to clean up her bed, she attempted to make it back to bed on her own. She didn’t get very far.

IMG_20140101_170332_705

Sophia has slowly begun recovering, and today (Saturday), she felt well enough to sit at the computer and play a game for a few minutes. Hopefully Emily will be just a day behind and will feel better within the next day or two. Today she is still on the couch, watching Netflix and sleeping.

The wonderful news about this illness, is that Emily has not had to go to the hospital! I called in Thursday, just to make sure we were okay keeping her at home and on her meds, and we were given the okay. She ran a low temp on and off for a few days, but nothing that ever reached the 101.4 marker, and I’ve been working really hard at keeping her hydrated. So another milestone has been reached: an illness without a hospital admission! Score one for us 🙂

It crossed my mind more than once to post earlier this week and ask for prayers, but I spent the week on the bed and couch with the girls, so this is my first chance at the computer. I know many of you pray for her continually anyway, and I appreciate those prayers!

Though it seems she is beginning to feel a bit better, I would definitely appreciate prayers for her weight and overall health. She has lost two and-a-half pounds already this week, and while that doesn’t seem like much, it’s almost 10% of her body weight. To put that into perspective, it took us an entire year to get her to gain three pounds. Optimistically though, she is healthier than she was last year, so hopefully putting on weight will be easier.

A bit underweight at the moment

A bit underweight at the moment

Miraculously, all three boys have remained healthy!

Oh! You may notice, looking at the above picture, that Emily’s hair is short again. I mentioned a while back that she was losing hair in the back. It just kept slowly falling out, so we finally cut off the side locks -there really wasn’t much there at all -and she’s growing it all back out again. She was a little sad to lose her curls, but we convinced her she looks like an adorable pixie, and she’s happy with that 🙂 And we’re all happy not having hair everywhere.