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!!!!