Friday, July 26, 2013

This Week's Updates from Lula's Mom

For those of you who love Lula and are keeping her in your continual prayers, here are some recent updates that her mother has provided these past few days. Now, more than ever, Lula and her wonderful family need your prayers, love and support.  Please keep this family continually close to you moment-to-moment through prayer.  

Lula, we love your smile, your kind and giving heart, your never-give-up attitude, your care free spirit.  You are the strongest person most of us will ever have the privilege to meet, and you are undoubtedly a hero to so many of us.  We love you so much, Lula!:  

***
Monday, July 22, 2013

"UPDATE: Hey everybody - thanks for your patience with the update. Lu's surgery started (officially) at 8:15 this morning. It was scheduled for 4.5 hrs, but the doc anticipated a 2-2.5 hr surgery. Instead, we didn't get to see her until about 3:00. 

The doctors were able to remove the tumors, but there were complications. Due to all the radiation therapy Lu has received, her lungs are not a normal consistency & they were "stuck" to the sides of the lung cavity, in a few cases, and, unfortunately stuck up against her heart, as well. The team was able to get out the tumors and took a bit of the pericardium (the sac that contains the heart), and the lung wall for biopsy. We should get those results on Wednesday. 

We will have another scan, but doc hasn't decided when because they want to wait the optimal amount of time to be able to clearly view the lung, post surgery. At this point, nobody is talking about this being curative. However, neither is anyone able to say "this much time" or "that much time". 

Worst case scenario - a tumor grows in just the wrong spot and she leaves us *very* quickly: super quick - 6 months. Less worst case scenario - things keep growing but we're able to pluck them out or keep them at bay for a while: a few years. Best case scenario - these two tumors are cut out and the cancer stays gone (please please please).

So, we wait. And we hope. And we pray. And we eat organic. And we do a lot of juicing and take our vitamins. And we ride our horses. 

We're in the PICU tonight - should be on the regular floor tomorrow, depending on the air drainage from her lung. Please pray. Everybody. We still have time for a modern day miracle."

***
Tuesday, July 23, 2013

"Lula's back is achy today - mostly because the chest tube that is draining fluid & extra air from her chest cavity runs along a nerve that can cause back pain. They are trying to increase her epi meds, because she HATES anything like morphine. This girl does not love medicine.  Please pray her some comfort today."

***
Wednesday, July 24, 2013

"UPDATE: We got the biopsies back today. The lung wall was clear, but I'm sorry to 
report that the pericardium came back cancerous. I would love to answer all your questions about what we're doing next, but I have no idea yet. Please keep us in your prayers.  to you all."

***
Today - Friday, July 26, 2013


"UPDATE: There is still a bubble in Lu's chest cavity. She will being going back into the PICU today - she has to be sedated and have her chest tube "adjusted". They are trying to get that bubble to rise up and get out of her. She is not happy about this. The kid needs to catch a break."

Monday, July 22, 2013

This Evening's Lula Update:

WE LOVE YOU, LULA!  

This evening's update from Lula's Mom.  Please hold this family up with your love and your prayers.  So much to pray for tonight.  So much...

"UPDATE: Hey everybody - thanks for your patience with the update. Lu's surgery started (officially) at 8:15 this morning. It was scheduled for 4.5 hrs, but the doc anticipated a 2-2.5 hr surgery. Instead, we didn't get to see her until about 3:00. 

The doctors were able to remove the tumors, but there were complications. Due to all the radiation therapy Lu has received, her lungs are not a normal consistency & they were "stuck" to the sides of the lung cavity, in a few cases, and, unfortunately stuck up against her heart, as well. The team was able to get out the tumors and took a bit of the pericardium (the sac that contains the heart), and the lung wall for biopsy. We should get those results on Wednesday.

We will have another scan, but doc hasn't decided when because they want to wait the optimal amount of time to be able to clearly view the lung, post surgery. At this point, nobody is talking about this being curative. However, neither is anyone able to say "this much time" or "that much time".

Worst case scenario - a tumor grows in just the wrong spot and she leaves us *very* quickly: super quick - 6 months. Less worst case scenario - things keep growing but we're able to pluck them out or keep them at bay for a while: a few years. Best case scenario - these two tumors are cut out and the cancer stays gone (please please please).

So, we wait. And we hope. And we pray. And we eat organic. And we do a lot of juicing and take our vitamins. And we ride our horses.

We're in the PICU tonight - should be on the regular floor tomorrow, depending on the air drainage from her lung. Please pray. Everybody. We still have time for a modern day miracle."

Lula Surgery Update:

Lula surgery update received from her mom at 10:30am: "Doc just called out - they found both tumors and are going to be able to get them out with the scope. No opening her up bigger than that! Yea! This will make her recovery a lot easier. "

Prayers for minimal pain and ease of recovery already being answered! Thank God for his mercy on this sweet little girl!

Lula Surgery Update

Surgery update received from Lula's Mom at 8:40am: "She's back in the operating room and under, but surgery won't actually start until 9. She is getting an epidural for post surgery pain management. Surgery itself expected to be 2-4 hours."

Continual prayers this morning PLEASE for sweet little Lula and her family!

Important: Please Pray!

In less than one-half hour, at 8am, Lula will be undergoing surgery in an attempt to have the two largest growing tumors removed from her lungs.  While her doctors do not believe that this will be a curative surgery, we ask you all to please pray for God's hand to touch and heal this little girl that we have all come to love and care for so much.  Please be praying, also, for strength and peace for her family today.  Please keep Lula and her entire family very close to you in all of your prayers throughout the morning.  If ever there was a time to be praying for Lula, today's the day.

Thursday, July 18, 2013

A Mid-Summer Faith Update

video 

Thus far, Faith has had a "normal" summer, and has been able to enjoy the usual summertime activities that all kids should be allowed to enjoy.  We are thankful for this, and of course, are thankful for the fact that she is feeling well and that the chemo that she is being treated with, is keeping the cancer out of her blood.  We do ask, that you continue to keep Faith and her family close to you through your prayers.  Above is a video of Faith happily flying a kite with her cousins during her recent trip to the Oregon Coast, and below is an update from her Mom and Dad:

"Hello friends and family!  

Faith turned 7 years old on July 14th.  With all that Faith has gone through, each birthday we celebrate with her is that much more special!  Highlights from her birthday were her new pink bike and her favorite meal of spaghetti and strawberry short cake.  She also had a great time with her friends at family camp during her birthday weekend.  

We've been enjoying the freedom that this last phase of treatment (Maintenance) has allowed us.  Faith goes to the hospital for treatment once a month and continues to take chemo pills daily.  Spinal taps are every three months.  She continues to have a healthy appetite when on steroids!  Her hair is growing back and she feels great.  She even made a 5 mile hike with very little help! 

Highlights of the summer have been visits from family, trips to the coast and water
balloon fights.  She has also enjoyed trips to the zoo, swimming lessons and sleepovers with friends. 

As far as we can tell the treatment is going as planned and Maintenance will be complete May of 2014.  Your prayers and support have been huge in getting us this far along this journey and we cannot thank everyone enough.  We would ask that you continue to keep Faith in your prayers over these next few months.

Much love,

Aaron and Rachel"


WE LOVE YOU, FAITH!!

Tuesday, July 16, 2013

Lula Update

Our limited minds are confused and don't understand, our caring hearts are troubled and very heavy, yet Robie's Got Faith resolves to keep the faith, hold on to hope and to firmly maintain our trust in God.  We ask that today, you please keep Lula and her family close to you through your thoughts and prayers.  Here is an update from Lula's mom regarding the results of Lula's recent scans:

"UPDATE: Oh, how I wish to type something else in this little box. 

Instead, I have to report that the scans showed tumors still growing in Lula's lungs. We have an appointment with the doctors tomorrow but, at this point, I am pretty sure we are talking palliative options, only. Which means, tomorrow I have to ask questions like, "How long?".

We talked with Lu and she has handled this with the same honest emotion and faith and fire that she has handled every other bump along this journey. Please keep us in your thoughts and prayers - I will post more tomorrow, after we meet with the docs.

Thank you so much for all of your loves - and for bustin' into my bedroom and helping me cry, Monique, for answering your phone, Chad, and for the B-E-A-utiful guitar, Darren. Balms for my weary, tender heart today."

Friday, July 12, 2013

A Mid-Summer Lula Update:

We are thankful for the great news recently received from Lula's Mom, and we hold Lula in our prayers as her next set of scans approach on Monday July 15th.  Please keep Lula in your prayers continually, and please pray that the tumors in her lungs will go away, while Lula continues to smile, laugh and feel wonderful!  We love you, Lula!  Here's an update and poem written by Lula's mother this week:


"Lula is having an absolutely WONDERFUL summer. We kicked it off with a birthday party, 20 kids from school, central-line removal, swimming, running, riding horses, threw in a wedding and a two week vacation to the Oregon Coast. Not bad, eh?

Her next set of scan are sneaking up on us. This coming Monday. We'll meet with Doctor Meeker on Tuesday and get The News. I'm leaning hard into the fact that the animals at the Oregon Zoo ignored her, like they did every other kid there. When we were in San Diego, on her Make-A-Wish trip, all the animals followed her, studied her - like they knew she wasn't long for this world... . SO! Being ignored by the aminals I have *officially* decided is the good omen for this set of scans.

Here's a poem I wrote:

Six Months Ago

I look at pictures of her, bald
little alien head
little flower

I look at her green tinge skin
feeding tubed nose
old lady / old soul / dark circle eyes

she's haunted
power-gressive, hungrykiller, eatyou cells - right there
in every picture with her

still so much stronger than the strongmen
braver than the heroes
more faith-filled than the saints

this : whom shall I fear?
this : valley of the shadow
this : daughter"