Radiation Therapy has begun

Kira started her radiation treatment yesterday; these daily treatments will take her right up to Christmas.  She will rely on quarterly scans for a few years to ensure the Cancer remains gone, so we won’t have an “all clear” test at the end of her treatment.  The main short-term side effect of radiation is fatigue, so Kira won’t be 100% for a while, but she is so much better than this past summer.

Her tumor is wrapped around the top and side of her heart and the top of her left lung.  It did shrink 50% during the chemo treatments, but not enough to forego radiation.  The radiation appointments will be about an hour with the majority of time dedicated to set-up.  Kira wears a mesh mask that was molded to her face and is attached to the bed.  Along with a formed back/side bracing, this keeps the body positioned for the specific radiation treatment.  She also received her very first tattoos (4) to serve as reference points.  The doctors, nurses, and technicians are nice and very thorough.

Alien Baby Extraction!

Today was a monumental milestone for Kira ~ the official end of chemotherapy!  She had her port surgically removed at Seattle Children’s Hospital.  The port allows the chemo to enter her bloodstream through larger arteries that immediately go into the heart, as opposed to using a vein in an arm and having the arm absorb the chemo before it gets to the heart to pump throughout the body.  It also allows for easily hook-up once you get into the hospital, or easy blood draws at the clinic.  However, it also becomes “the” reminder of chemo over time and it feels alien in the body as it resides just beneath the skin.  Today, that reminder is gone!

We have an empty weekend for recovery (hallelujah!) and Kira is aiming to return to school next week!  She will also start radiation at UW on Tuesday and return each day afterschool for a short 1-hour appointment.  The 14-day radiation cycle ends on December 23.  She won’t have an “all-clear” test or scan as radiation works over time.  A few months into the New Year, she’ll get a scan to ensure that the cancer hasn’t returned.  This will continue 2-4 times per year for a few years, and then reduce to annually.

We are feeling better about radiation and about getting it done at the UW.  While we hold high regard for UW, Swedish just built a new hospital close to us.  We contacted Swedish and talked to the Oncology Radiologist and quickly found out that he is buddies with the UW Oncology Radiologist.  They are very good and detailed-oriented doctors and understood our concern to compare the equipment at the two hospitals.  The equipment is the same, but both thought that keeping Kira inside the SCCA network will benefit communications. 

We really appreciated your comments on Facebook expressing your support and prayers to our family.  Thank you Peggy for being at the house to watch over the kiddos today and all the cleaning that you do, and thank you to Jen for taking care of Vanessa and Baron today! 



The Next Chapter

We met with the lead doctor for Hodgkin’s Lymphoma yesterday afternoon to assess Kira’s all-day tests from Monday.  The good news is that she is done with chemo!  She is tentatively scheduled to get her port surgically removed tomorrow.  After it’s removed, she wants to run it over with the car!

Unfortunately, her mass hasn’t changed since her 2^nd chemo treatment.  To ensure that the cancerous cells are truly dead, they recommend 3 weeks of daily radiation even though her PET scans were clean after chemo treatment #2.  Radiation therapy is insurance against a second flare up of Hodgkin’s as that would be more problematic.  We have mixed emotions.  We want the best care for Kira and know that the Seattle Cancer Care Alliance (Fred Hutchinson, UW, and Seattle Children’s Hospital) is a leading cancer research organization in the world.  On top of that, Seattle Children’s is connected to the other 200+ Children’s hospitals around the world.  This has given them an amazing amount of pediatric cancer patient data to create treatment plans. That said, Kira’s PET scans were clear and the radiation is to ensure they remain clear.  Radiation has its own side effects and we just want to be done.

If the penciled-in schedule remains in-tact, the radiation treatments will start Monday at UW and will take her right up to Christmas.  We have UW appts today to prep for the radiation therapy, but are considering getting a 2^nd opinion and look into getting the radiation treatments at the brand new Issaquah Swedish Hospital to avoid the daily 520 bridge traffic.

We are pretty bummed and Kira is frustrated, but we know it’s for the best. Thank you for your help, hugs, support, prayers, gifts, rides, and laughter.

Cost of treatment to-date = $178K (3 months).  I’m in the wrong line of work!

We Are Thankful!

Hi All,

We hope you all had a wonderful Thanksgiving!  We had a nice, relaxing, uneventful dinner at our house.  It has been amazing to feel normalcy returning to our lives...as much as you can expect with 4 kids!  Relaxing at dinner & afterwards with family was great - we even had a special guest from Michigan here - our niece Sara... made it even more special.  The highlight of the night?  Definitely had to be Kira & Kelsey dancing after dinner ... brought tears to everyone's eyes.

Kira is doing very well.  She spent some time with her horse yesterday - took her for a hand walk on the trails and spent a while just grooming her.  She is so relieved to be done with chemo - but she is very tired.  After doing some reading, talking with the doctor and hearing from other survivors, this is to be expected for about a year.  We will continue to take it one day at a time - something we have finally accepted. 

Today is another day of tests for Kira...this is a big one.  Tuesday we will follow-up with Kira's Oncologist to find out if radiation is needed - please keep her in your prayers.  They need to see atleast an 80% reduction in order for no radiation to be needed.  We will update the blog as soon as we have any new information.

I can't believe the Holiday Season is upon us.  This is the time of year that we give thanks to those who are special in our lives.  Our list is pretty long this year!  We are so blessed to be supported by such a loving family & community.  My mom wrote to the local paper to express her gratitude.  The article below was in yesterday's Seattle Times. 

Thank you all so much for the support & love you have shown our family!  Much love, Linda

Thankful

Hi folks.  We have sure learned a lot during the past 3 months.  One of the lessons is that the Day 8 out-patient chemo treatment is very tough to deal with.  It’s a double dose of her Day 1 chemo meds and it gets you when you are just starting to recover from the Day 1, 2, 3 hit.  The Day 8 chemo treatments have been harder on her than the hospital stays.

Kira is starting to feel better and was up and talking last night.  She’s also dealing with an overall low of going through 4 chemo treatments.  She has been extremely fatigued this past week and even blacked out, which led her to getting a blood transfusion on Friday.  Her platelet counts are also too low, so she will get a platelet transfusion this morning.  Platelets allow the blood to clot. She’s also in her expected low for white blood counts, but will exit this period just before Thanksgiving.  While it has been very challenging to see her go through all of this, and we pray that her body continues to respond well, we are so very thankful to our friends and family.  This past week especially, as we’ve had other excitement to contend with.  To have a meal delivered rebuilds us each day.  It relieves a daily stress point, provides nourishment to our family, and reminds us that our community is very supportive and loving.  We have witnessed the true meaning of Thanksgiving.

Round #4

We are so excited to type this post - we are at the hospital for our last treatment...EVER!!! This round began last week (nov 10th). She was admitted for chemo and came home on the 12th. They adjusted her meds this round due to some unwanted side effects - as a result, much less nausea! We came home Nov 12th and she has been feeling pretty good - we had to go back one day for fluids and her blood counts were going down but they have come back up since then. Some of you have asked about her chemo meds - Kira's cocktail is a mixture of vincristine, doxorubicin, bleomyacin, etoposide & cyclophosphamide. Today we came to the hospital for an outpatient chemo treatment. We are almost finished & ready to go home...she is so happy...but very tired. She cant wait to get back to "normal" ...whatever that is for a teenager. She really misses her friends! After this we come back November 28th for scans...then a follow up with the doc Nov 29th. As long as there is an 80% reduction there will be no radiation required. Kelsey has recovered from her concussion just fine - she had basketball try outs at Eastlake this week and made the JV team - congrats Kelsey - we are so proud of you! There is no way for us to say thank you enough for all the help everyone continues to provide - the meals, carpools, horse help, care packages, flowers, cleaning - such amazing family & friends that we have - we feel so blessed! We will update you after our scans on the 28th - thank you for your prayers! We have learned so much over the past several months - most importantly...slow down & love those closest to you. We wish you all a healthy, happy and fun-filled Thanksgiving!!!!

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