Soleil is back home as of Monday! Everything “stickers” seems to be her therapy these days.

She has had sleepless nights and experienced a new onset of emotional lability (which we are praying also goes away) possibly a side effect to treatment probably combined with being in-and-out of the hospital. Still, our Sunshine Girl remains strong. This lil’ mama has and continues to push through emotional and physical challenges. 

In just one year, so much has changed yet some things remain… like the focus Soleil had to finish her first Turkey Trot this time last year; it’s the same determination she has today. Game face and all.  Thank you for keeping Soleil in your prayers. Let’s keep cheering her on! 

(Granville Island Turket Trot 10/11/2015)

Soleil has hit her low point with blood counts, or Nadir (a side effect of chemotherapy and critical period that follows each cycle). With a weakened immune system to fight infections, her hospitalization at Rady Children’s is covering her with the antibiotic Meropenum. Since yesterday, her fever has fluctuated from 101.7 to 99.9. She is receiving Tylenol to cover her fever. It appears that white blood counts, ANC and hemoglobin are lower than yesterday. The good thing is it can only go up from here! While we wait, instead of sink in struggle, we choose to float by faith! 🙏

Thank you Golden “Acorn” Grandmas and Uncle JR for arranging another FUNdraiser with a shuttle bus, raffle tickets and bingo at Golden Acorn Casino this Saturday morning. We appreciate and love you all!

After yesterday’s labs, ANC is 0 and Platelets 31. In clinic this morning for a Platelet transfusion.

She had a slight hive reaction to the Platelets and spiked a fever. Will be admitted for antibiotics and monitoring – time for Mama and Soleil to catch up on episodes of Sofia and Doc McStuffins!

Thank you for staying the course with us and sending our Sunshine Girl your thoughts and prayers!

Soleil completed Round 2 of chemotherapy yesterday! She went in with Mom and Dad for her outpatient infusion and came out of chemo singing. If our Sunshine Girl can sing in the rain, I really have nothing to complain about!

Fatigue and insomnia have been consistent symptoms. We were holding our breath for a bit with the personality regression / listless bouts and incontinence. But your prayers are being heard! And it is definitely a relief to again, hear Miss Personality say, “Nature’s calling!” or make us laugh with her funny comments.

Physically, Soleil’s left side has been weak since the tumor resection in April. We hope to be back on schedule with PT and OT to get this girl walking and on the playground. Today, she was able to push her sister in the stroller. These baby steps make us extremely proud!

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It’s been approximately 5 weeks since the first round of chemo; a bit delayed with a few unexpected, scary setbacks but we are praying it is smooth sailing from here on out.  

God has brought us this far and He will see us through. Thank you for uplifting our Sunshine Girl with your thoughts and prayers! As Soleil says, “…love you to the moon and back and forth!”

Here’s our Sunshine Girl during her chemo-cycle 2-stay/admit at Rady Children’s: 

With her bald and bold Barbie doll!Super Soleil with Wonderwoman Oncologist, Dr. Elster!Posing with Dad!

Drawing pictures of Dad!​Bedside Physical Therapy!Singing along to her personalized song!

Making sure her feet smell good!

And yesterday wrapping up cycle 2!

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The past two weeks have been eventful for our Sunshine Girl: after being discharged home from the OR and PICU, we were admitted on Friday for a fever. She is back home, afebrile and resting.

Behavioral and incontinent changes are most noticeable yet we are praying she will come out of it. It’s been an emotional and physical time but Soleil still shines through with her smile and a silly-sarcastic mark here and there. 

During this time, she was able to sing and celebrate the birthdays of her Dad and brother, as well as welcome a new baby cousin.

Our Little Miss is recovering and ramping up for the next cycle of chemo. A few setbacks won’t stop us from moving forward.

Truly grateful for the collective thoughts and fervent prayers; know we also send happy thoughts and blessings your way.  Together, we will power through! ☀️💪

Brain MRI and Chest X-ray are clear! Ventricles are reduced in size but still dilated, please pray that her ETV will remain open for life and that her body can absorb the CSF. Many, many thanks for your prayers! Here she is with Neurosurgeon Dr. Gonda and Nurse Jenn.

 Thank you family and friends for the prayers over the weekend! Again, we hope for your extra prayers as Soleil goes in for a brain MRI this morning.

Last Friday, she woke up with a persistent headache and vomiting, May and James brought her to the ER. Instead of starting her second cycle of chemo, she went into the operating room to relieve the built-up pressure. Though a setback, thank God we were able to address the Hydrocephalous and ETV prior to the next round of chemo. 

The neurosurgeons were able to repeat her Endoscopic Third Ventriculostomy (ETV) – and avoid a shunt – to relieve the pressure in her brain. We pray that the ETV will remain open and patent for life and that her body is able to manage the absorption  of her cerebrospinal fluid (CSF).

While in the OR, she had a reaction that caused her to bottom out -she needed chest compressions and a blood transfusion. As a result, she was intubated and went to the ICU to clear the pulmonary edema. Over the weekend, she was extubated and switched to Bipap. 

Each day she is recovering and clearing the fluid; yesterday’s chest X-ray revealed slight haziness on the right lung which we hope has cleared overnight. Still pending results from this morning’s X-ray. Our Sunshine Girl is sprinting and hopes to be off the machine today. She is so determined to do what it takes to get out of the hospital:

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Soleil is scheduled for an MRI at 8:30 this morning. Asking for your prayers and positive vibes that our girl is in the clear! We LAVA YOU!​

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​Soleil’s counts are climbing along with her sassiness. She has been nauseated here and there and fatigued a bit more, though we suspect it’s the (post) radiation and chemotherapy effects combined. While recovering at home, our Sunshine Girl and her family were finally able to chase the sun, the way they had in Vancouver.

Little Miss also has a new, left leg brace to assist her back to walking on her own. You can catch her rockin’ her rainbow-designed, yellow-strappy-strap brace,while she plays or is at therapy.

Soleil shows improvement at every session she has with Physical Therapist Ms. Amber and Occupational Therapist Ms. Christine. 

Next steps will be to discuss her audiology and lab results, as well as second cycle of chemo. Friends and family, please keep Soleil in your prayers for a full and complete recovery with no evidence of disease or recurrence.

September is childhood cancer awareness month! We are always grateful for the continuous prayers for Soleil, her cousin Malakai – (who has been cancer-free with no evidence of disease for almost two years, YAY!) and for all our little super heroes. Let’s keep lifting them up with your faith, love and light! 🙏💛✨

With an ANC of 270 and RBCs at 8.1 today, there’s no need for a blood transfusion or another night in the hospital. Soleil is now home; thank you for the prayers all!

Still aiming for ANC to be greater than 1,000 and overall counts to continue getting higher, faster.

We are all so very happy our Sunshine Girl is home for recovery!