Take 2: Kira is Home

Shortly after I published the last blog update, we had to rush Kira back to the hospital due to excruciating pain in her back which turned out to be a kidney stone.  We took her in at 2:30am Friday and after 6 hours in the ER, we got admitted to the hospital and stayed the rest of the day and night.  We were discharged Sunday afternoon...  *poof* weekend gone!

While kidney stones could be rude coincidence and unlucky timing, it's probably a side effect of the chemo drugs as they dehydrate the patient.  We’ve dealt with a lot of dehydration (trips to the ER for IV fluids).  When the kidneys don’t have enough flow and get too much sodium, calcium, or sugars, chances are much greater that kidney stones will form.  “Dietary factors that increase the risk of stone formation include low fluid intake, and high dietary intake of animal protein, sodium, refined sugars, oxalate, grapefruit juice, apple juice, and cola drinks” (Wikipedia).  It’s also hereditary.  See all these facts you’re learning!

We had two distinct experiences Thursday and Saturday nights when Kira spent the night in a hospital room (she spent Friday night in ER) that reminded us that it could be much, much worse.  Although we are dealing with complications to the chemo drugs, we aren’t dealing with a 17 course chemo treatment plan nor are we trying to force-feed our resistant child that is suffering from severe anorexia.  We remain positive and hopeful of an easier final treatment cycle (#4) that starts on November 10^th.  Thank you for your thoughts, prayers, meals, and help with the chores! 

Happy Halloween! ~ here comes the holidays!

Kira is Home

Kira was wheeled out of the hospital tonight feeling a little bit better.  Kira stumped a lot of disciplines today – the cancer docs, the GI docs, the speech guy, and the nurses.  While the docs don’t have answers, they have an idea that it may be something to do with the muscles around her esophagus – it’s a super long name that I actually tested the doctor to see if she could spell it (she did).  Basically, the middle third of her esophagus isn’t working in rhythm.  The chemo drugs could be causing it, or they could be giving her more stomach acid which is causing reflux.  Kira will get a procedure done on Tuesday that sends a camera down her throat to search for more answers.    

The view out Kira’s window was the construction site, so it was pretty cool to look out the window and see “HI KIRA” on the building!  The workers were busy welding today, so it was bizarre when the docs came in to talk to Kira and their faces would lit up with the welding flashes.  It was very appropriate for Halloween weekend. 

Kira also got her first transfusion today (platelets) to boost her ability to clot in prep for her procedure Tuesday. 

Thank you all for your thoughts and prayers!!!

p.s.: Team Kira is nearing $7900!  Wow!

http://pages.lightthenight.org/wa/SeattleL11/TeamKira

When it rains...

This past week has not been easy, just when you find a new normal, life throws a curve ball.  Without the help of awesome family and friends, we’d be in a world of hurt.  Thank you so much to everyone that has helped us this past week.

This past week, Kira’s throat has been causing her discomfort by closing up so much that it has been hard to swallow and sometimes even breathe.  Wednesday was her out-patient chemo and the docs decided to remove one of the chemo drugs to see if it was the cause.  We still need chemo as Kira’s mass needs to shrink by another 10% (minimum) to be in the clear, so not giving her a chemo drug is somewhat problematic.  

She was struggling even more today and became bedridden.  Linda took her in to Seattle Grace (I mean, Seattle Children’s) and along the way they had to meet up with an ambulance.  She got oxygen immediately and proceeded to the hospital.  They have admitted her for the night as they are not really sure what is causing the swelling in her throat. 

Last night, Linda had to rush Kelsey to the hospital as she got a concussion, and a heck of a shiner, from basketball practice.  Her coach was playing with the team and they both went up for a rebound.  She looks like a boxer now.  We tried to make her stay home from school today, but she was determined to go.  She’s a tough one. 

Lastly, our kitchen is torn up.  We decided to get a double oven and ripped out the old one just when the dishwasher decided to breakdown, and Kelsey went to the hospital.  We are extra thankful that meals are getting delivered!

Kira’s a Rapid Responder!

These words have never meant so much to us:

“Photopenic area corresponds to residual post treatment soft tissue mass in the mediastinum, indicating no detectable residual hyper metabolic activity.  Anterior mediastinal mass has significantly decreased in size.”

In English, it means Kira is a Rapid Responder to her chemo treatments, and at this rate, no planned radiation therapy is required!!!  Thank you for your thoughts and prayers!!!  Kira’s mass has shrunk by about 50%, her symptoms that have plagued her for 9 months are GONE, and her lung capacity is NORMAL!  At one point, we asked what it takes to be declared that her cancer is in remission and the doc replied that Hodgkin’s doesn’t have a “remission” state like leukemia and other cancers, but Kira’s PET scan shows “NO DETECTABLE SIGNS OF CANCER!”  Can I get an AMEN?!? God is great!

Kira still needs to go through two more treatments to further reduce her mass and ensure that the cancer cells remain DEAD!  Her chemo cocktail starts at 9am tomorrow, but we feel very blessed, strong and ready.  This past cycle has been MUCH better than the initial cycle, thanks to med changes and everyone that has helped us with meals, kid taxi service, and chores. 

We are very thankful for the meals and rides.  Thank you to Mary for a wonderful meal tonight.  Thank you to the army of people that will help us over the next 4-5 days as we start cycle #3!  The prayers are being felt and it gives Kira smiles when she learns of another congregation praying for her.  Thank you.

Kira's Progress

Kira is doing well and feeling strong.  She exited her critical phase strongly, so her bone marrow is doing its job.  She went for a jog over the weekend (both surprising and worrying us) but she made it back just fine.  Today, Kira went to Math class (at home!) and will be hosting her History and English tutors tomorrow.  We are planning to go searching for the Great Pumpkin tomorrow afternoon, and if all goes well, a Haunted House on Wednesday night!  Her next treatment starts Thursday.

Meal Calendar

We added a few more dates to the meal calendar (http://www.takethemameal.com/meals.php?t=SBRM0096) as we better understand Kira’s treatment schedule and are hearing that more folks what to help out.  We are so grateful of seeing the wonderful smiles as folks drop off meals.  Today’s smiling face was Karen – thank you Karen for the wonderful meal!  We devoured it, and as usual, it was so timely!  Dianne’s Turkey Tacos on Friday were the most amazing food on Mother Earth.  We ate it throughout the weekend and were saddened when it was gone - gonna need that recipe!  Thank you Dianne!!! 

Special Visitors

As we finished up dinner tonight, we hosted a very special organization to our house: Make-A-Wish Foundation!  Wow, what an incredible visit!  They wanted to learn all about Kira and her family… even Miss V (her horse).  They shared some previous Wish Kid wishes and did a little brainstorming with Kira.  We signed the paperwork and now just need Kira to decide on her wish!

Chores/Kid Taxi

On the chores/Kid Taxi requests (https://lls.lotsahelpinghands.com/c/646341/login), we believe we just need a pick-up for Kelsey on Friday @ 4pm from EHS, and the stalls on Wednesday and Saturday.  We’ll be at the hospital for the definitive word on Kira’s progress on Wednesday, then in-patient Thursday through Saturday for treatment #3 (of 4).    

Community = Love

Thank you all for the thoughts, prayers, letters, posts, pictures, meals, help with chores and rides!!!  You have given a rich and deep meaning to the word community.  Linda and I are so grateful!

Hugs,
Jeff

p.s.: Congratulations to Mr. and Mrs. Sternfels!!!  We are so very proud of you both on your wedding!!!  Thank you very much for honoring Kira during your special day!

Day of Tests

Hi All,


We were at Children's today for routine tests to measure Kira's progress.  She had a PETscan, CT with contrast, pulmonary function tests, echo, ekg & of course ... labs (her least favorite)!!!  I believe that she is actually overcoming her fear of needles - way to go kid! 


When she was diagnosed with Hodgkins, her lung function was at 48% - today it was at 78%!!!!!  Her Eco & Ekg were normal (as expected).  We won't hear the results of the Pet & CT until we go in next Wednesday - we have an appointment to meet with her Oncologist for a detailed look at her progress at that point. 


She was pretty tired - especially after the pulmonary tests she had - it is clear that her breathing is still quite difficult - but all the news that we heard was very positive - GO KIRA!!!  After our meeting next Wednesday we will be sure to update the blog with all the details.


Switching gears, there was a story in the local news about Seattle Children's & the how the construction workers started spray painting patients names on the steel girders to raise the kids spirits.  Below is a link to the story - Jeff spoke of it in an earlier blog post.  Today we discovered that Kira's name made it up on the building!!!  Thanks to Greg - Kira's favorite crane operator (also my friend Deb's brother) for making that happen!!!!!  Below is a link to the original story & the pics of Kira's name!!!


http://seattletimes.nwsource.com/html/localnews/2016361664_names30m.html


Thank you for all of the prayers & support!  Our love to you all.  We are sending lots of love from Washington to Michigan this weekend to the Hanson-Sternfels families for a wonderful wedding!

Thank you so much to my brother Jim and Grace for the awesome dinner and for driving Ms. Meg.  Thank you to Jill and Peyten for the wonderful salmon dinner!!!  These dinners and kid taxi service are so helpful.

Thank you to my mom for coming over and staying with the kids!!!

Love, Linda






Treatment cycle 2 of 4; Day 13 of 21

Kira has been up and down these past few days struggling with nausea.  It seems like the Day 7 out-patient chemo really hits her hard.  Next time, we plan on doing daily appointments for IV fluids to ensure hydration.  She’s emotionally exhausted and just wants to be done with cancer.  She has a full day of tests tomorrow to determine if she is a ‘Fast Responder’ or not.  Please pray for Kira that she nails this milestone and stays away from radiation treatments after chemo. 

Her low white blood cell count is most likely now for the next few days, so it’s not looking good for school this week.  We were hopeful of at least a day or two.

Thank you Keren and Dylan for the wonderful dinner last night!  We are still enjoying it!  Thank you to Kirsten for doing the stalls on Sunday!

Rollercoaster Ride

Our new 17 year old spent Saturday in a low point of this rollercoaster ride and had to be taken to the hospital for IV fluids.  She felt much better afterwards and enjoyed some time with her buddies Erin, Caitlin, and Kelsey at their “Friendship Tree” in the pasture.  We were so thankful to host Erin, our surprise Californian guest!  It was even sunny and warm here for Ms. Erin! 

Kira and Kelsey’s Montessori teacher and the kid's nanny from a lifetime ago, “Miss Amanda,” dropped off a gorgeous quilt that was filled with prayer knots from her church.  What a wonderful gift of warmth!   Thank you Miss Amanda!

Happy 17th Birthday Sweetheart!

Happy Birthday Kiki!  Gosh, I feel so old! ... but, not as old as Jeff!  (Hee hee, sorry dear!)  Kira turned 17 on Friday, October 7th.  The day started out very quiet - Kira was still very tired from her chemo treatment on Wednesday.  She slept most of the day in prep for dinner out with her buds.  She met her friends at the restaurant at 7pm - shortly there after the girls received a huge surprise.  Erin Sheridan (their friend who moved to L.A. after 9th grade) flew up to join Kira's Birthday celebration!!!  She arrived just minutes after the party started - there were lots of screams at the restaurant...thankfully it's a family joint so they're used to the outbursts!  There was a lot of laughter, severe goofiness and some pretty fun gifts.  After dinner they gathered in the parking lot for an impromptu Disney Sing-A-Long. They belted out their favs such as Hakuna Matata from Lion King,  and Part of Your World from Little Mermaid.  It was a fun way to end the evening - even the restaurant employees enjoyed the entertainment!  Kira had a great time with her amazing friends - thanks guys.  Here's a snapshot of these bright & beautiful young ladies outside of the restaurant:

Prayer Requests: Although it is difficult to watch Kira endure the chemo treatments, it is so encouraging to see her spark returning.  Next week (Wednesday) we go to the hospital for tests to check her progress.  Please pray that the results of her PET scan show that she is a rapid responder to the chemo. 

Thanks for all the Birthday wishes - thank you Angela & family for the yummy dinner & cute balloons.  The support that you are all giving is keeping us going - All of our love...from our family to yours!

A Good Week

Sorry for the black-out. 

With the help of awesome family and friends helping us out at every turn this week, we have been able to focus on taking care of Kira, going to Graham’s bball games, and SHOP for Kira’s birthday presents!!!  Thank you to so many folks!!!!  Peggy, George, Jim, Grace, Nancy, Murray, Amy, Chris, Julie, Julie, Sue, Susan, Kirsten, Wade, Anke, Megan, Lora, Brandon, Keegan, and Deshea - THANK YOU!

Linda and I were talking about this whole ordeal last weekend, still somewhat in disbelief.  We have remained strong and positive due to your prayers and the massive help that we have received from the above and many others during the previous weeks.  You have enabled us to maintain this strength and positivity.  Thank you!

Kira has maintained her rapid recovery this week with her wonderful smile.   She has rarely spent time in her bedroom, which is drastically different from the 1^st cycle.  She had a planned out-patient chemo appointment yesterday which did knock her out for the day.  She has eaten and kept fluids in her much better than the last cycle. 

Kira goes in for a blood draw and test on Sunday.  Due to her strong state, they are actually thinking a quicker bounce up from the critical white blood count phase and quite possibly school next week!  Keep your fingers crossed!

Kira says hi to all and thank you!  OMG, she’s 17 tomorrow!

Hugs,

Jeff

Silly Heart



This is your brain... and this is your brain on drugs.



Kira is spreading joy and happiness.  She got out today for some fresh air but tires quickly.  She is eating well ~ we were all together around the dining room table tonight!  She has an out-patient chemo treatment on Wednesday which will probably slow her down a little, but she’ll be back!  This weekend and in to Monday will be her low-white blood cell count phase, so no partying for this chic.

Special thanks to Julie for picking up Kelsey Rae; Mama Baier, Brandon, and Keegan for doing the stalls; Wade for tucking the horses in tonight; and Amy for an amazing meal!  We greatly appreciate your effort, company, and support!

Hugs,

Jeff

Another Strong Day!

As a Japanese name, Kira may be written with the character for “glitter; gleam; twinkle.”  "Kira kira" also means glittery, or shiny, in Japanese.  Today, our Kira was all of that!

I am thankful for another good day today.  Kira went back in for her planned blood draw and got a bag of IV fluids.  Upon return home, she expressed an interest to go on a ferry ride, or shopping at the mall, but we all knew that might be pushing it… so she carved a pumpkin.  I loved watching her carve her pumpkin today.  A strong, determined look in her eye as she wielded the knife in her hand.  I didn't fool her when I came into the room with a bloody hand and knife (we also enjoyed finding and putting up the Halloween decorations today).  She was alert and happy today, but tired out in the early evening.  She has bounced back so much faster than during the last chemo cycle.  Kira is strong!  Thank you for your continued prayers.  Thanks to Sue and Kirsten for helping out again with the horses.

hugs,

jeff

Home Sweet Home

Kira came home from the hospital today!!!  She even helped pack her bags and was sitting in the chair waiting to be released… she had enough of that hospital bed.  Then she called the front desk and said, “I want outta here!”  J  She is doing MUCH better on this Day 3 than the first cycle’s Day 3.  She drank a lot yesterday and woke up today requesting FOOD!  At one point today, she even requested salmon.  Wow!  (or, true North Westerner!)  She already has her color back and even has decent energy.  We are really taken back at her strength!  I don’t want to get too overly optimistic right not, I am just very grateful for today. 

Thank you for your prayers!  Thank you for your cards, flowers, balloons, wonderful dinners, and help with the chores and Kid Taxis!!!”  It’s all working!  It allows Linda and me to focus on taking care of Kira and ourselves and we are so very grateful to you all! 

Thank you so much for Susan and Jack for taking care of the stalls and horses and Kijrstjn for proving our family with a wonderful meal!!!

Love,

Jeff & Linda