"Side!"

After Cash received platelets this past Sunday, we went in for more CBC's on Wednesday.  At that time they expected him to need more by yesterday so Wendi took him back in but they went up - so only one transfusion this week which was great.

He also completed his last antibiotic treatment on Thursday morning - it was a long 10 days, infusing antibiotics every 8 hours.  Schedules has to be adjusted to work around the infusion times but Cash is so used to being hooked up he didn't even seem to mind.

What he does mind though, is being indoors...Cash loves being outside and is terribly bored with anything indoors.  Yesterday morning he woke up at 4:10 a.m. and the first thing he said to me was, "Side!" (translated "outside").  I kindly told him it was way too early to go outside, in fact, it was too early for us to even be awake.  I then told him mom, Jack Jr, Kingston, and Paco are all still sleeping and we should be sleeping to, but he didn't buy it...

So Wendi spends a lot of time "side" with the kids - my cousin Hana was here this week from Monday through Thursday and they did crafts, went to the park, and played outside all day.  I would come home from work with paintings for me and a whole lot of paint on the kids...:-)  Hana was a tremendous blessing to us this week - she played with the kids, read to them, and helped out wherever she could (Thanks Hana!).  Yesterday they went to Carkeek park and Wendi texted me this wonderful picture:

We still continue to take it one day at a time because that is all we can do - we celebrate each day God gives us Cash and go to sleep with thankful hearts for the time we have.  Thank you for your continued prayers and please keep our little friend, Christopher and his family in your prayers - they need your prayers now more than ever...

Day 3 Does It

Things settled down nicely after we left the hospital on Wednesday.  Cash was able to resume his play with his brothers and the weather has definitely helped out - we spend a large portion of the day in the backyard, and today we wrapped Cash's hickman up so he could play on the slip and slide.  Jack Jr. and I had a few water gun battles and Cash thought that was all pretty funny, even though he was the recipient of a few stray squirts of water.

Wendi took Cash to an appointment on Friday to check his blood levels - at that point we could tell he was going to need platelets, however, they were still good Friday.  They then asked us to return Saturday and his levels were still ok, but dropping fast, so they had us return this morning.  His platelets went from 50 on Friday to 32 on Saturday, to 17 this morning (30 is the cutoff).  You can definitely tell when they are getting low - his color disappears and he is very fatigued.  At 12:00 today he received an infusion and we were back in the backyard by 1:30.  They definitely helped - he was the best he's been in a few days and even though every 8 hours he still receives antibiotics, his demeanor is still great.  We are still amazed at his strength - I said it many times but I don't think I would be as chipper and energetic if I were going through all of this.

My wife continues to amaze me - between taking care of Kingston (9 weeks old tomorrow), Cash, and Jack Jr, she still finds time to take incredible photographs of Cash and the boys.  Here is a small sample of pictures she took at the cabin last weekend.  She captures Cash's expressions and persona perfectly.  She even finds time to shoot weddings as she did on Friday - for more of her incredible photography skills please check out http://thesnapsisters.blogspot.com/.  I am very blessed to be married to such an amazing woman and don't know what I would do without her...

We smooch his often so when we ask him "Smooch?" he pulls the face above...:-)

Cash is out of the 'chemo-sick' phase as I refer to it and is starting to eat well again - tonight he ate two pieces of corn on the cob - his taste buds must be a wreck and we are constantly searching for new foods he may like, but his trusty mainstays continue: pancakes, sausage, corn, and milk of course.

Thank you for your continued prayers - two weeks until the next round - we continue to steadfastly pray that the tumor(s) are shrinking or ceasing to grow...

Time to Update

We made it home last night and slept in our own beds which was very nice.  Prior to this hospital visit, I had wanted to post on our wonderful weekend - well it's a few days late but here is the story...

We were blessed by Karen Reinsma with the use of her cabin in Birch Bay this past weekend.  The kids had such a good time and we were able to see a lot of family while we were out there.  On Saturday Bob and I took Jack & Cash to the Raspberry Festival in Lynden. Cash got to spend time in Herm's oldie:



The weather was perfect and it was great to be outside and we enjoyed the time (not knowing we'd spend the next three days in the hospital)...

Have a blessed day and thank you for your prayers!

Almost Outta Here

Well we're nearing the two+ day minimum stay at Children's.  Cash's fever thankfully peaked on Monday night and didn't return after Tuesday mid-morning.  He's 100% better than he was on Monday - very active, laughing, and returning to his normal self which we're very thankful for. 

Juggling work, kids, and hospital has been quite an adventure for Wendi and I this week.  On Monday night, Marti H and Tami N spent the night with Jack & Kingston.  Then Jack went with Marti Tuesday, Tami took care of Kingston, and Wendi ran back and forth from home to the hospital.  Bob, my parents, and Jeremy all came down yesterday and helped take shifts so I could work and Wendi could keep running back and forth - today Julie H came down and took care of Kingston (I hope I didn't forget anybody)...in spite of all of the running around, we're very thankful for the help and extremely thankful Cash recovered so quickly...

The doctor's haven't been able to find an infection, however, we will be administering antibiotics (with a pump from the hospital) for the next 8 days, 3 times per day, at home (thankful we could get then training to do it at home, similar to last time).

Hopefully we're leaving tonight - when I say tonight it's probably going to be closer to tomorrow, the earliest we can leave will be 11:00, after another dose of antibiotics and a blood test.  We'll be glad to sleep in our own beds...

Two pictures from this week stand out to me - the first Wendi took in the ER and the second I took - his looks seem to tell the whole picture.

Thank you for your prayers this week!!!!

Admitted...

Cash was pretty tired the past few days so when we had our appointment/blood draw this morning we figured he would need blood. His ANC's were zero and he needed blood and platelets - they started the blood around 3:00 and he started getting a fever...

His fever spiked over 101 around 5:00 which is an automatic admission for a few days. Because it was after 'hours' for regular admission, they shipped us off to the ER, which is where we still are as of now (11:00 pm). He was given two different antibiotics and a ton of fluid. The fluid caused some swelling and they were concerned that maybe fluid could be going into his lungs so they took a chest xray and are closely monitoring him.

We'll be heading to the SCCA soon. Cash was very lethargic most of the day but seems to be perking up a bit.

I'll post an update tomorrow and would appreciate your prayers - we pray he doesn't have an infection and will be able to go home in a few days. Thank you for your prayers!

Location:Sand Point Way NE,Seattle,United States

Tumor Board Meeting

The Seattle Children's Tumor Board met yesterday to review all of the cases of children with cancer, including Cash's case.  I met briefly after their meeting with our nurse practitioner to hear the comments on the spot on Cash's spine.  In our excitement Tuesday that there weren't cancer cells floating in his spine, it is the general consensus of the board that the actual spot on his spine could be another PNET tumor.  We have another MRI scheduled for early September and during that MRI they are going to focus more detail on the spot to see if it's grown, etc.

The good news is that the current chemo's Cash is getting attacks the cells all over the body, including the spine.  We're in a wait-and-see mode right now but are still hopeful and trust that the current round of poison Cash is getting can make 'hay' so-to-speak.

Yesterday Cash received his stem cells back to help him recover his counts between chemo rounds.  It was a long day, we started at 8:00 a.m. and left Children's at 7:00 p.m.  Cash did great, in fact, typically during the actual transfusion of cells, kids can get very sick (the transfusion only takes 10 minutes) - Cash slept during the whole thing thankfully.

Passing the time is always a challenge - we went on many walks in the stroller and did whatever else we could think of to pass 11 hours in a small room.  Here is a shot of Cash in the stroller and a short video of one of our many 'activities'...

Our next appointment is on Monday and we're praying Cash stays healthy and free from any illness.  Thank you as always for your thoughts and prayers!!!

It's Not What They Thought It Was

At about 2:00 today I called Children's to see if they had results on the lumbar...I was getting impatient and really just wanted to know...

The words rang beautifully in my ears as Corrine read the report: "Negative for Malignant Cells" - I don't remember what she said after that and am so very thankful that for the time being the cancer hasn't spread to his spine - Thank you Jesus!

It's been a very difficult few days - not only has the chemo made Cash sick again, we were dreading having the puncture done and then having to wait for the news.  The news we just got definitely gives us the strength to fight on and help Cash get through the chemo-sickness.

Speaking of chemo, we were in the hospital on Saturday and Sunday for chemo round #4.  They were very long days as Cash isn't a 'baby' anymore, meaning he wants to crawl around and didn't like being confined and hooked up for two days.  Thankfully my parents and Wendi's parents spent a ton of time with us, taking shifts entertaining Cash.  We didn't leave the hospital until 10;30 on Sunday night but we're now 2/3 of the way done with chemo.

Tomorrow we have another long day at Children's for Cash to receive his first round of good stem cells.  We'll start at 8:00 and they'll hydrate him and pre-medicate him up in order to receive the cells (which only takes 10-15 minutes).  After the transfusion they keep him for another 4 hours to monitor and make sure he stays hydrated.

As difficult as this has been the past few days, God continues to give us the strength to endure - there were times this weekend that we struggled emotionally simply to keep going and there's so many unanswered questions, however, those moments are short-lived thankfully.

We are going to rejoice in this moment and thank God that Cash doesn't have cancer in his spine - uncertain of the future, Wendi and I will simply celebrate a small victory and keep taking it one day at a time.

Thank you for your prayers - I know some of you have taken Paul's words and are "praying without ceasing."

Bad News for Those Who Like Good News

We are starting to not look forward to MRI days...This is the third MRI in Seattle and all three have given us news that we weren't expecting - all have been a step back.  Today's MRI revealed growth in the brain stem tumor, however, it is still the belief that the radiation effects could have been the cause for the growth. On a positive note, there was significant contrast in the tumor, which indicates the cells are dying (at its core).

They did identify a new spot, however, this one is on the lower portion of his spine.  They are unsure of what it is and there is a small chance that it's unrelated to the tumor, but it is a small chance.  On Monday Cash is going to have a lumbar puncture to pull some of the spinal fluid and check it to see if the cells are PNET.  If it is PNET then the tumor has spread down his spine.

We are going to proceed with the next three rounds of chemo starting tomorrow morning.  The two chemo's he'll be getting will flow to the spine so if the cells are bad they could be affected by the chemo.  We are again reminded not to look too far ahead and simply take it one day at a time.  It's definitely been a tough day and just as we feel like we're getting on top of this, something else happens.  Our faith isn't wavering, however, and we trust that God has Cash in His hands.  We are thankful that he's not in pain at the moment and continue to pray that this round of chemo will stop the cells from dividing.

This morning, not knowing what the day would hold, I downloaded an app that allows me to take pictures that look somewhat 'vintage'.  I went a little crazy today and here is an assortment of pics I took with Cash. My father-in-law, Bob, and my parents came by today and spent quality time with Cash (as you'll see in the pics).  Tomorrow Bob & Edna and my parents will be with us, splitting time between the hospital and the home, helping us care for both Cash and Kingston.  Jack Jr. is having the time of his life in Lynden with Uncle Jeremy and his family.  It is heartwarming to know we have such an amazing set of parents and family - they are all with us and helping us through this.

Please continue to pray for Cash and Christopher - two of the three kids in North America with this tumor reside here in the Northwest and they are both fighting to try and beat this.  Thank you for your support and prayers!

Another MRI

It has been a great week in Seattle (and the weather has been perfect) - this past weekend we were in Crescent Bar and the weather provided Cash with the ability to crawl around outside nearly all day.  Without being on chemo, he's under no added threat of infection so he played and played all weekend.  Wendi is pulling the pictures from the weekend and I will post them soon.

From a progress standpoint, Cash is doing well - he continues to try and stand and loves climbing the stairs.  The stairs are definitely the best exercise he can get when it comes to strength building.

Prior to starting the 4th round of chemo on Saturday, Cash has an MRI tomorrow.  While it's not expected that it will reveal any significant shrinkage (the radiation effects last for 2-3 months), we are desperately praying the tumor hasn't grown and spread to other parts of his brain and/or spine. 

Observing Cash closely the past few weeks, I truly believe he can be healed - that being said, we absolutely know that we are not in control of that decision and continue to lift Cash up in prayer to God.  Some days it seems like we spend the entire day (in our minds), silently petitioning the Lord for healing.  Most often my prayers continue to be prayers of thanksgiving, thanking God for the miracle that is Cash and celebrating each day/hour/moment we have with him.

We also continue to pray for all of the kids we've met with cancer - some are doing well and others not so well.  I keep praying that God grant us and these families peace, strength, patience, and understanding and would ask that you continue to pray for Cash and all those who are battling cancer.

Thank you for your support and prayers and have a blessed weekend!  We'll be in the hospital Saturday and Sunday for chemo but hope the weather sticks around so Cash can play outside next week...

Studio Shots, a Prayer Request, and a Short Message

Even though I'm married to the most wonderful photographer in the world, occasionally she prefers to have the boys' picture taken at a studio...on Monday we took the kids and had their pictures taken.  It was quite an adventure but the boys did great - here are two of Wendi's favorites:

 Jack Jr. is such a blessing to us - we are so thankful that God placed him in our lives 3 years ago.  His tenderness for his brother is a testimony in itself.

On another note, please be in prayer for Christopher Hartley (age 3, PNET tumor like Cash) - his family received news yesterday that his tumor is spreading in spite of the treatment.  Pray for strength, understanding, and peace as they process this new information and continue to fight.

We will cherish and enjoy each day the Lord gives us with our children - after hearing the news about Christopher yesterday, I was brought back to my early days in Catechism (thank you Rev. Joostens for making sure I knew this!) - Lord's Day 1:

Q.

What is your only comfort in life and in death?

A.

That I am not my own, but belong--    body and soul,    in life and in death-- to my faithful Savior Jesus Christ.    He has fully paid for all my sins with his precious blood,    and has set me free from the tyranny of the devil.    He also watches over me in such a way    that not a hair can fall from my head    without the will of my Father in heaven:    in fact, all things must work together for my salvation. Because I belong to him, Christ, by his Holy Spirit, assures me of eternal life and makes me wholeheartedly willing and ready from now on to live for him.

(Taken from http://www.crchurches.net)

Cancer is a result of sin and thank God that Jesus paid for all sin with his death on the cross.  While I don't know when I (or anyone else) will leave this earth, it is a tremendous comfort to know that our salvation has been worked out through Christ's blood and when that day comes we will be free from sin (and cancer) and death and live with God forever...

Thank you for your continued prayers and I hope everyone has a blessed long weekend!