Final Run Details

We are very excited for the Seattle Run of Hope on Sunday - to date we have 113 teammates and not counting the registration fee, the amount raised is over $4,000!  That is amazing and we're looking forward to seeing everyone at the run - here are the details/times from the Seattle Run of Hope Website:

8:00 AM     Packet Pick Up and Day of Race Registration Begins

9:15 AM     Day of Race Registration Ends

10:00 AM   5K Run Begins

10:10 AM   3K Walk Begins

10:30 AM   Post Event Festival Begins with live music from American Standard

11:15  AM  Winners announces, Raffle begins, Sarah Mary Award presented

12:00 PM   Event Ends

The event is at Seward Park - the address is 5902 Lake Washington Blvd S. Seattle, WA 98118.  After the walk you can head over to Zion Preparatory Academy for a luncheon.  Zion's address is 4730 32nd Ave. S. Seattle, WA  98118. 

As I've written before - there is so little research done in the area of children's brain tumor and we are so thankful for how much has been raised so far.  Seattle Children's has a large research team and I'm praying that more is found that can help Cash and other children like him.  Those participating are helping out tremendously and we'll see you all on Sunday morning!

Have a blessed week and thank you for your support and prayers!!!

Extended Offer

Lynn from Silpada Jewelry emailed me and offered to extend the opportunity to purchase items from http://mysilpada.com/Lynn.Kern from now until October 15.   For those of you not familiar with Silpada, it's beautiful, hand-crafted sterling jewelry backed by a lifetime guarantee.  Silpada also offers great watches and belts.   All purchases will be sent directly to your home.  If you're interested please contact Lynn either by email at LynnKern@windermere.com or call her cell, 206-755-2024.  (Thank you for extending the deadline Lynn!)

Great Wolf

We were blessed with the opportunity to spend the weekend at Great Wolf Lodge near Chehalis (thank you again Sarah J we really appreciate it!!!).  Cash and the boys had a great time playing with their cousins (Dillon, Kendra, Olivia, and Isaac) and I don't know who is more tired this evening, Cash or Wendi and I.  It was so much fun for the boys to play in the water and it seems like Cash's strength is returning more and more each day.  In fact, he was really active all day today - sometimes he's energetic in the morning and fatigued in the afternoon, but today he was 'on' all day.  He still wakes up bright an early - here is a pic of him this morning at 5:30 a.m. (he took a 20 minute nap during the day and fell asleep at 8:00 this evening - I don't know how he does it...).  The second pic is from dinner last night - they gave all the kids wolf ears (but I wore mine the longest...:-)):

Cash has labs tomorrow and we're basically free for the next few weeks (no chemo, appointments, etc.).  We're all very excited about the upcoming walk - there are 95 walkers signed up for the team!!!  I will blog later this week where we plan on meeting - hopefully we can all walk as a group (except those who are running, we won't be able to keep up with you!).

Don't forget to join us after the walk at Zion for a luncheon - I posted directions via link on the prior post - please email me at jackp@zionprep.org if you have any questions and I'll do my best to answer them.

We are continuing to hold out hope and are thankful for your prayers and support - God has been good to us and Wendi and I often comment on how joyful we are, in spite of the circumstances.  Have a blessed week and we'll see many of you on Sunday!!!

Important Walk Update and a Jewelry Opportunity

I have two exciting pieces of information to share today:

For everyone who is walking or running in the Seattle Run of Hope (and there is 91 of you so far!!!) please keep reading:

After the walk (if you've registered, the walk/run starts at 10:00 a.m.) we want to invite you to join our family at Zion Preparatory Academy for a luncheon.  It is our way to say THANK YOU and give you an opportunity to visit with Cash and visit with wonderful family and friends.  Zion's address is 4730 32nd Ave. S., Seattle, 98118 and it's only about 10 minutes from Seward Park.

Jack Jr. helped me pick the menu - Zion's amazing chef, Bro. G., will be cooking up fried chicken and catfish, mac & cheese, collard greens, and more.  The luncheon will start at 12:00 which will be plenty of time to get there after the walk.  Please join us - we'll have plenty of food and it will be great fellowship.

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Yesterday I was contacted by a Lynn Kern, a co-worker of Mike N. (who got the Cash of Hope team started) - she sells Silpada jewelry and for the rest of this month she is donating 100% of  the proceeds from all sales to the Cash of Hope fund.  For those of you not familiar with Silpada, it's beautiful, hand-crafted sterling jewelry backed by a lifetime guarantee.  Silpada also offers great watches and belts.   All purchases will be sent directly to your home.  There's not a lot of days left in September, so if you're interested please contact Lynn either by email at LynnKern@windermere.com or call her cell, 206-755-2024. In the meantime, check out her link at www.mysilpada.com/Lynn.Kern

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Thank you so much to everyone that has donated not only to the Cash of Hope fund, but for the walk - to date over $3,000 has been raised by you for pediatric brain research.  We keep searching for a cure and this morning Sarah J sent us information on a study that was recently done on methotrexate (Cash just started getting that monthly via spinal tap) - we continue to hold out hope and are contacting doctors all around the world (today I was email contact with the author of the study - he is from Japan).

God continues to cover Cash with His protection and grace - it's been a rough week for him and he's still fatigued, but we're hoping we can boost his spirits - tomorrow we're headed to Great Wolf Lodge - Cash will be able to swim and play until he's tired not from being sick, but from playing too hard...:-)

Thank you for your prayers and support and remember, if you're walking next Sunday don't forget to join us for the luncheon afterwards - we want to see everyone and say THANK YOU personally!

(Directions from Seward Park to Zion are located here)

Gamma Ray Complete

Yesterday morning started very early...Cash woke up at 1:00 a.m. and since he couldn't have any chocolate milk (sedation at 6:30 a.m.), he decided he wasn't going back to sleep.  Wendi kept him busy until 4:00 and then I took him on an early morning car nap (he did sleep in the car thankfully).

By 6:15 we were at Harborview and the nursing staff at the gamma knife center started preparing for the procedure.  Cash was the only patient of the day so it was nice having the center to ourselves.  By 8:30 they had him sedated and put the brace on his head so he would be perfectly still during the procedure.  He was wheeled to another room for an MRI and as soon as it was over Dr. Douglas started mapping how to best radiate the spot.  He then went into the gamma knife room and 30 minutes later was wheeled to recovery.  We were home by 12:30 which was a pleasant surprise.

The rest of the day Cash was very fatigued.  He was obviously tired from the sedation and procedure and fatigue is a common side affect.  This morning he was a bit more chipper and hopefully he expresses interest in eating today (yesterday was all milk).

Everyone got a better nights' sleep last night and we are continuing to pray that all of this we are putting Cash through works and that he remains healthy.  God answered our prayers yesterday and He continues to extend His grace and mercy to us and to Cash...

Thank you for your prayers!!!

He Didn't Forget

It's been almost 8 months since Cash has been able to take a bath free of the hickman line...as soon as Cash could roll over as a baby he would 'swim' in the tub, stomach down, legs and arms flailing.  Since February, however, not only has he been unable to 'swim', he's subjected to a big patch that is stuck over his site and he was lucky if he ever saw more than 2 inches of water in the tub.

That all ended today - the site of his old hickman has healed and he had a chance to have his first 'line-free' bath today.  I don't think it was 20 seconds into the bath when he plopped down on his stomach and started to 'swim.'  It was a joyful moment for Wendi and I and I'm certain that while we didn't tell him not to swim when he had the line, he simply didn't even try.  It's like he knew this morning that he could swim again...

Lately Cash hasn't expressed that much interest in eating which we're watching closely.  That being said, he's still not losing weight.  In addition, he still is drinking chocolate milk (don't even try regular milk...:-)).  We don't really mind because he's keeping the weight on and the absolute best chocolate milk in all the world is from Twin Brook Creamery in Lynden.  Cash loves it and we can barely keep it on the shelf and were blessed by the Stap's this past weekend with 6 bottles of it!!!

It's been another great week and we continue to feel very blessed and are genuinely joyful and thankful.  That doesn't mean it doesn't get hard at times but those moments are minor in comparison.

Please pray for the gamma knife procedure on Tuesday, that it goes well and accomplishes what they are intending for it to do...Have a blessed week and thank you for your prayers and support!

A Bright Moment

Cash met with the gamma knife specialist today to discuss the upcoming procedure on the 21st.  The doctor's name was Ferreira and he was Portuguese which added to our conversation.  Unfortunately, he's on vacation next week but the other doctor, along with Dr. Douglas and a physisist, will be present during the procedure.  It is setting up to be a long day, starting at 6:30 a.m.  The actual procedure only lasts about 20 minutes but they have to do an MRI first and then map the best plan to shoot the 129 beams into the tumor so it does the least harm to good tissue.  We're hopeful and trust this is the best option to treat the new tumor and would ask for prayer for the doctors as they plan and that Cash comes through 'unharmed' so-to-speak.

During our wait today, Cash and I played with the camera on my phone and using an app that mimics the photo booths you occasionally see, here's what we did:

He had another great day, however, this evening while he was sleeping he threw up, which was a result of the chemo's we have been giving him.  I have to make sure I give him the anti-nausea meds on schedule to hopefully prevent that over the next few weeks but again I'd ask for prayer for Cash as we keep trying to 'maintain' these tumors.

God is continuing to teach us that each day is precious and to enjoy our children to the fullest.  We pray continuously that God grant us more time with our Miracle and are so thankful for how well Cash is doing.  Please do me a favor and hug your kids a bit tighter tomorrow and in spite of how 'busy' we can be, take extra moments to enjoy them and tell them how special and unique they are...

Thank you for your prayers and we feel your support whether you are near or far...

A Great Weekend and an Upcoming Walk Video

All I can say is thank you to God for a wonderful weekend!  Cash has been doing very well and we are simply celebrating each day we have together.  Jack Jr. and Cash are best friends and Cash couldn't have asked for a better older brother - he plays with him all day and despite the occasional fight over a toy (or the iPad), they get along very well.

I received an email today from Mike & Wendy, the brains behind the Cash of Hope team for the upcoming Run of Hope Seattle - Wendy's sister and her husband, Jenny and Kyle, put together a beautiful video of Cash for the run.  We are almost at 70 strong for the team and Mike and I talked this evening and we're now setting our sights on 100 people on Cash's team and we want the video to go viral so more people are made aware of cancer in our young children so send it out to everyone you know! (The direct link to the video is http://www.youtube.com/watch?v=7LVQomUX9SA)  The monies raised all go towards brain tumor research and I continue to pray that other children diagnosed after Cash will benefit from this valuable research...



Wendi got all the kids dressed up for church today - we no longer have to worry about his counts being too low to go out so it was very nice to be at church and we caught up with friends who have been reading the blog from afar and continue to pray every day.  (There's even a gentlemen at church who makes knives and he made one with ACoH on it - I can't wait to see it!)

This week please pray that as we start the oral, low-dose chemo's that Cash takes them in ok and doesn't get too sick...in addition, please pray that as we prepare Cash for the gamma knife treatment on the 21st that everything will go well in pre-meetings with the doctors.  It will be a busy week of appointments but we continue to trust that these treatment options will be the best for Cash in order to maintain and/or shrink these tumors.

Thank you as always for your support and prayers!!!

Lines Out, Port In

The past two days have been a whirlwind - Yesterday Cash had his surgery to remove his hickman lines and have a port (or port-a-cath) put in.  As usual, the surgery didn't happen on time - we arrived at 12:15 and they didn't start the surgery until 3:00.  We woke Cash up early (5:30) that morning and fed him pancakes, sausage, and his usual chocolate milk (he doesn't like regular milk anymore...) because he wasn't able to eat until after the surgery. 

At around 5:00 we were able to see him in recovery and while he was groggy, he downed 8 ounces of milk immediately and minus throwing up in the car on the way home, he did very well.

Today he had his first spinal tap with the methotrexate.  They had to put him to sleep briefly for the procedure and since it was the first day of school, Wendi, my mom, and dad were there while Joanne was at home taking care of Kingston.  Then at 2:30 we met with the radiation oncologist, Dr. Douglas, and we talked about the upcoming gamma knife procedure that will be done on the new spot in the right temporal lobe.

The gamma knife procedure is very interesting - they shoot 129 beams of radiation from all around his head into the tumor location and they don't really 'activate' until the beams cross each other, which will be precisely on the spot of the tumor.  They don't anticipate too many risks to his right eye, although there is the potential of swelling.  The gamma knife procedure will be a week from next Tuesday and it takes basically a full day.

We couldn't have done it the past few days without tremendous help - many thanks to Megan, Joanne, and my mom and dad - they babysat, went to appointments, cooked dinner, cleaned the house, and everything else in between.  I have had to be at work since it's the start of school so they picked up tremendously while I have been in and out.

We're still hopeful that the methotrexate and low-dose chemo's (which start on Monday) will keep the tumor at bay - Cash still is doing well and we're so thankful for each day we have and now that his lines are out, we'll be able to go swimming and he can take a bath for once without a big patch over his lines and our cautious watch on any tiny drop of water that could infiltrate the spot.

God continues to bless us during this trial and we are are grateful for His grace and mercy on Cash and our family.  Thank you for continuing to support and pray with us and to God be the glory!!!

A Long Weekend

On Friday we were all packed and ready to leave for the lovely vacation home that the Hoolsema's gave us for the long weekend, however...I took Cash in to have his counts checked and right before we were going to leave, I decided to call and check on what his counts were and he needed blood...So Wendi took off to Birch Bay with Jack and Kingston while Cash and I pulled a long afternoon at Childrens'.  We finally got out of there at 6:30 and were at Birch Bay by 9:00 so it wasn't too bad.  The blood definitely helped Cash out - he had a lot more energy this weekend so it was definitely worth it.

Jack Jr.'s birthday was this weekend so we had two days of parties for him - the first on Saturday at the KOA with the VanderHoeks where he even had a pinata to smash.  The second party was at the vacation house on Sunday with the Parriera's.  We all had a great time and it was great that everyone got to visit with Cash.  The house that we were given for the weekend was absolutely amazing and so well designed that our family fit perfectly in it - if anyone wants a week or weekend retreat on the Bay, please visit www.rentwithusbirchbay.webs.com.  We are so thankful that we had the opportunity to get away at such a beautiful location - Thank you Hoolsema's!!!

Tomorrow Cash has surgery to remove his Hickman line and put the port in.  In addition we meet with the radiation oncologist to discuss the gamma knife procedure to hit the new spot in the temporal lobe.  We continue to pray that this tumor can be held at bay with the medicines he'll start receiving.

The support we continue to receive has been amazing - school starts at Zion on Wednesday and I have to be at work the next few days so my mom and Joanne are coming down to help out so I can continue to work.  This is just an upcoming example and if you've been reading the blog for some time I often thank those who will drop anything to babysit, take Cash to appointments, clean the house and make dinners, etc...

In addition to those who are helping us in Seattle, there are so many unsung heroes during this trial who are behind the scenes praying and supporting those who help us out.  Two people come to mind, Wendi's mom, Edna, is a prayer warrior for Cash and I know she never ceases to pray and prayer is what enables Cash to keep going throughout the days (p.s. Mom, sometimes it's ok to pray with your eyes open).  The other is Wendi's Aunt Betty, who takes care of Julie's kids as she faithfully comes to Seattle often, bringing meals and much needed support.

We want to thank everyone for their prayers and support, many continue to ask, "What can I do?"  The best thing you can do is pray - prayer is so essential and critical that you have no idea how it keeps Cash going and propels us to keep fighting through the power of the Spirit.  Keep praying because we need it and if Cash isn't on your fridge as a reminder, email me and we'll send you a pic!

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Update on the Seattle Run of Hope:
I just checked the number of participants for the Walk/Run on October 3 and it's now to 46 people, up from 24 last week.  Wow it's going to be a great day for brain tumor research and your support of Cash's team is incredible!  I was hoping for 50 but we're already almost there - now I'm shooting for 75!  :-)

Have a blessed short weekend and I'll post multiple times this week as Cash has a lot going on.  Thank you for your prayers and support!!!

Decisions

Today Wendi, my parents, Jeremy, and I met with Dr. Leary and the oncology team to discuss the next steps in Cash's treatment.  It is apparent to the team and tumor board that the chemotherapy/stem cell infusion wasn't accomplishing what they had hoped it would do.  With that, they came to us with a proposed plan of treatment that they are hoping will slow down the progress of the tumor.  The meeting lasted almost two hours and while it was emotional for everyone, we left feeling better than when we arrived.

The tentative decision, and I say tentative because we have to meet with the radiology specialist on Tuesday to discuss the pros/cons of gamma knife but I'm getting ahead of myself...

First of all, we are going to have Cash's hickman line replaced with a port (woohoo!).  It will allow Cash to be able to swim and not have two lines sticking out of his chest that were a constant source of fear of infection.  That will take place on Tuesday.

We are going to give Cash two different low-dose chemo's that we can give orally to him - one chemo is 5 days in a row and the other is 10 days in a row.  I can't remember if we then wait a few weeks and start the process again or just keep rotating but we'll find out next week.  Cash will start this a week from Tuesday.

In addition to the low-dose chemo, once a month Cash will be receiving a lumbar puncture that they will then give another drug, methotrexate, right into his spine.  He'll get that next Wednesday.  All three of these drugs have very limited side effects, which is very high on our list (more on that below).

The doctors are very concerned about the spot behind his eye.  It's actually in the temporal lobe and while very small, it wasn't on the scan 6 weeks ago.  The radiology specialist at the UW indicated that he believes gamma knife radiation is a viable option to 'hit' the spot.  The only side effect is swelling and we have to meet to discuss whether or not that can temporarily affect his vision, however, the doctor believes it is far enough away and shouldn't cause damage at its current size.

Our main goal is selecting these treatment options are to allow Cash to remain relatively healthy and hope that these treatment options slow down the growth of the tumor.  It's obvious it's spreading and there have been studies that show that with this combo (chemo and methotrexate) this type of tumor can slow down and in some cases stop growing. 

We deeply hope the tumor stops spreading and growing but are realistic in understanding what he is up against.  Cash has been relatively healthy during all of the 'poison' we've given him and we'd like it if he remains healthy so we can enjoy our time with him, take him places, and live life to the fullest so-to-speak.

Speaking of going places, the Hoolsema's have offered their home in Birch Bay to us this weekend and we're heading there tomorrow - they even put food in the house based on what Cash likes and we're already thankful and excited to spend a weekend at the beach with family and friends.

In other news, 24 people have signed up on the Cash of Hope team in the Seattle Run of Hope - the list includes two family friends from California, Renee and Saul Castro.  They are flying up to visit and walk with us which is amazing.  I'm so excited to have so many join the team and help support research - hopefully someday there will be a cure for brain tumors and your support of Cash's team is incredible.

God has been so good to us - in spite of the circumstances, Wendi and I are continually thankful for His peace, wisdom, strength, courage, and hope that He has given to us and Cash.  We continue to need your prayers as we enter this next phase of treatment - Cash's birth was a miracle and an answer to prayer and we continue to pray for healing.

I know this post was long but there was much to say and much more I probably could have said.  Thank you and have a blessed long weekend!