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!

MRI Results

Well today was another MRI - I think this is his 5th or 6th and we tend to not look forward to them (for pretty good reason as you'll see below).  The best way to describe the results are not encouraging and not discouraging...

The good news is the main tumor in the brain stem appears to still be 'dying' - there is more contrast than the last MRI which either means it's dying or growing inside the stem, but it doesn't seem larger so we're sticking with it's 'dying'.  Another positive from the MRI is the spot on his lower spine is barely visible.

The not-so-good news is while the spine tumor is barely visible, there is now what they refer to as 'sugar coating' - smaller spots that are not visible to the naked eye, but clearly appear to be additional tumor cells.  The other news is that there is visible contrast that may indicate another tumor behind his left eye.  Dr. Leary wasn't certain what that was, but it was not there in July.

Since the current chemotherapy isn't 'shrinking' the tumor as they hoped it would, they are recommending not finishing the 6th round of chemo/stem cells.  Instead, they are going to create a comprehensive list of every possible study, research or experimental, and chemos/medicines that are currently being used on brain tumors - we are meeting on Thursday to go over this list and Children's will make a recommendation on what they think would be the best next steps.

At the same time, I've already mailed the MRI results to MD Anderson and they will be doing the same process and coordinating next steps with Children's.  We are still in 'fight' mode and the doctors are still amazed at how well Cash looks.  He has not digressed in the 8 months since diagnosis and we're holding out hope for the 'miracle'.

We had great support today and the list includes my parents, Jeremy & Steph, Bob, Auntie Ine, Auntie Dee & Uncle Bill, Auntie Karen and Uncle Gil - we kept busy and are in good spirits.

Speaking of Auntie Ine, she flew up on Friday and helped out tremendously today - she took care of Kingston and Jack Jr while we were at the hospital.  We had a great weekend in Lynden and here are a bunch of pictures from the weekend and a very funny video of Cash laughing until he almost runs out of breath...oh and I also bic'd Jeremy's hair so it's nice and smooth like mine and Cash's...:-)

There is so much more I feel I could write but will stop for the time being.  Another great piece of news is that there are 15 people signed up to walk in the Seattle Run of Hope!  That is great and if you want to walk please see the last post - I'm hoping for 30 or 40 people to walk with Cash!

Thank you for your support and please continue to pray for our Miracle!

Seattle Run of Hope

Two great friends of ours, Mike and Wendy, created the "Cash of Hope" team for the Seattle Run of Hope, which will take place on Sunday, October 3.  It is a 3k walk or 5k run - Wendi, Jack Jr, Cash, Kingston, and I will be walking (I don't think I've 'ran' since high school) - it's a beautiful location, Seward Park, right here in Seattle.  I'm hoping as many of you as possible can join us.

The Seattle Run of Hope will raise money for pediatric brain tumor research - last year they raised over $250,000.  You can register to participate in the event by clicking here.  Cost to register is $30 per person.  If you can't participate but would like to sponsor the Cash of Hope team you can do so by clicking here.


We've been so careful the past 7 months to avoid crowds because of Cash's counts that we haven't participated in anything that supports cancer research.  Thankfully Cash will be all done with chemo and we will be able to re-join the community so-to-speak so we're looking forward to the event and it would be great if many of you were able to walk with Cash to support this important research.

It seems like we've been running into walls when it comes to seeking additional treatments for Cash - so little is known about Cash's tumor but we're holding out hope that something is out there that can cure Cash or children like Cash.  Of course we know that God is the 'Great Physician' and can heal Cash, and ultimately, our 'healing' comes when we join the Father in heaven.  So it's a win-win for Cash and for us as well...

I'd like to share a few pictures from yesterday of the family - it's amazing sometimes to sit back and realize I have three boys, a wonderful wife (married 15 years today), and an incredible network of family and friends.  We are blessed beyond measure!

Cash-in-the-Box

It's been a relatively quiet weekend - the weather hasn't allowed Cash to play outside as much as he'd like, however, we are finding ways to entertain him inside.  Cash did need platelets on Friday (the second time last week) and that seemed to give him the energy he needed to have a good weekend.

Yesterday morning Cash woke up and entertained himself not with the toys I bought him, but with the box (that figures)...Here's a video of him figuring out how to get inside the box - it was pretty funny.



Here's are two pictures of Cash I took yesterday playing my guitar - he loves playing it much more than he does listening to me play it...

Jack Jr. has been amazing during Cash's illness - he keeps both kids busy with his energy and can make both kids laugh with his craziness and they love trying to copy him...

This week looks pretty quiet so far - next Monday we have the next big MRI and then Cash will start chemo over the long weekend - then we're done with all 6 rounds of chemo!  We're excited to be 'done' with this part of treatment and are hoping and praying that the tumor will be held at bay.  In saying that, we don't look too far ahead and are living one day at time - God has been good to us and blessed us tremendously and we trust that He knows what the future holds for Cash and we take tremendous comfort in that.

Have a great week and thank you for your prayers!!!  Keep praying!