Week-At-A-Glance

This weekend Cash has done quite well - he's only thrown up a few times and while he is not eating as much as he did pre-chemo, he is managing well.  Today he even tried to walk and crawled around the house, getting into trouble with his brother.

Tomorrow we have a lengthy, 8 hour test in which they will test Cash's kidney (called an Iothalamate Test) to see how they filter and clean blood.  We're bringing Jack Jr. and a bunch of Dora DVD's to pass the time as he'll be hooked up to 'the machine'.  On Wednesday Cash has a few physical therapy appointments and I assume we'll be back one or two more times later in the week for blood draws.  As of Friday his levels were dropping but haven't fallen to a point that would require transfusions which we're thankful for...

We did find out that Children's has spaces available for RV's - during Cash's next chemo treatment we are going to either use my brother's motorhome or my father-in-law's trailer.  That way we'll all be 'on-campus' and Jack Jr. can stay with us - it will be good to have him there, Cash lights up when he is around - Jack constantly hugs him and says, "I love you little buddy."  We all love our "little buddy" and continue to pray that this tumor shrinks and stops growing.

On another note, thank you to all who have provided meals for us - it has been a tremendous blessing not to worry about what to cook and the food has all be excellent.  We are continually grateful for your support and prayers!

"Tiffany From Monroe..."

I was driving to work on Wednesday listening to KRJ a.m. and Mitch was talking with Jackie and Bender from Kiss 106.1 about their telethon to raise money for Children's Hospital for the uninsured children's fund...After the interview I switched over to 106.1 and they were reading names of people who were giving money through the telethon to Children's and I heard Bender say, "...and Tiffany from Monroe just gave $ in the honor of Cash, who is currently a patient at Children's."  I figured there weren't many 'Cash's' at Children's and I only know a few families in Monroe so I called my cousin when I was driving home and sure enough, Tiffany is her sister-in-law.  My investigative skills are amazing...:-)  I also had a good friend hear the same thing on the radio and as I and found out the next day, one of my teachers also gave during the telethon.  'Cancer', consider your awareness raised!

I have been overwhelmed with the support we've received and at the same time have been changed forever about how I feel about cancer and those who are impacted.  We are ordering buttons and I'm going to get a t-shirt that says, "Cancer Sucks" - because it really does and I feel that more than I ever did before.

Today I took Cash in for two appointments at Children's, one to draw blood to check his levels and the other was to meet with our excellent nurse practitioner to talk about any recent challenges we've had...we're still struggling to get Cash to take his meds and will most likely be looking at having a nutritional tube put in.  While I'm not excited about another 'tube', this will ensure he's getting the nutrition he needs and we can put the meds in the tube as well, bypassing his gag reflex - the meds must that taste like soap and motor oil to warrant such a reflex...Zion's Assistant Principal talks about castor oil from back in the day, I wonder if it's from the same company...

I'm still very positive and will continue to fight - Cash has decided the crib is no longer a place for him and has taken residence with me on the couch the past few nights.  He'll wake up many times just to reach over and see if I'm still there, then drift back to sleep.  As he drifts back to sleep I quietly pray for him once again.

Good To Be Home

We made it home from Children's yesterday afternoon.  I passed all of my 'training' and this morning was my first real attempt (without nurses) at changing Cash's Hickman caps, flushing the lines, and giving him a shot.  He wasn't too keen on the shot and he's definitely on to us...we have to crush the meds he needs and mask them in various foods but no matter what I try, he turns his head and says "No!"  Today my mom and Auntie Geri came down to help us for a few days and with Wendi's help they managed to get his meds down so that was great.

I realize now why the doctors and nurses don't tell you what we were in store for at the beginning...slowly over the past two weeks we've learned about all of the things we have to do outside of the hospital.  Honestly I don't think we would have been in the space to even receive all of the information but now after one round of chemo we're understanding what will need to take place.  In between chemo treatments we have many visits to the hospital for labs, visits, tests, etc.  This morning it took nearly an hour to do the work mentioned above (cap change, line flush, etc.)  Our prayer is that his levels rebound quickly and he's stays healthy which will keep us out of the hospital for any added days.

Both my work and Wendi's have been incredible - Wendi's co-workers donated over 150 hours of time to her to take off during all of our visits to the hospital and Zion has been very generous with my time off.  Today at work at the end of a meeting my director stopped and for the next 5 minutes we simply took time to say Thank You to God for everything He's done, everything He continues to do, and everything He will do.  I have been too busy petitioning God that it was great to stop and thank Him.

Cash has been much better since we've gotten home.  He still throws up occasionally but with Jack Jr. running around swinging his swords and our dog, Paco, Cash is much more engaged that staring at Wendi and I in the hospital.  Our blessings have been many and today Jeremy bought us another small freezer to store the amazing food people have been giving us.  It's very nice to not worry about dinner after recovering from 5 days in the hospital.

The support we've received in these few short weeks has been nothing short of incredible.  Tonight my prayer will be one of thankgiving!

Pictures from the SCCA

Tonight is the last night for a few weeks at Children's and we're excited to get back home once again.  Today we were 'trained' on all the things we have to do to take care of Cash during the time in between treatments - I thought that just because I've been paying attention to the line flushes, cap changes, and Hickman dressing I would be just fine...How I was mistaken but I passed and will get a lot of practice tomorrow before we leave in the company of the experts.

We're tired and ready to go home but we did have fun today (the best we could).  I wanted to experience what Cash experiences each night when he sleeps in the crib/cage and Cash was busy on the Mac...

And I think this is one of my favorite of favorites:

 

If you're asking what you can do for us - continue to pray for this beautiful little boy that God heals him.  We are all in His hands and I trust Him with my life and the lives of my family.  

Day 2 of Chemo

The most surreal moment of the past two days occurred when Cash was sleeping and they put the first does of chemo into his body.  We know it will help and it's needed but to be holding him when the 'poison' (as I refer to it) was put into his body it came with very mixed emotions.  First day went well and as they warned us, the nausea and vomiting could follow...that came early this morning when he threw up three times by 8:00.  I chucked to myself though when he quickly followed that up by eating a bowl of cheerios, a yogurt, and a piece of cheese (with earnest) - it has to be the steroids because they make him hungry and crazy at times. 

Getting him to sleep the past few nights has been a chore, since he's hooked up to IV's all day he doesn't get the chance to crawl around as usual and after fighting sleep for a few hours, he just closes his eyes and goes to sleep.  Speaking of sleep, every time he sleeps we have to go to sleep, otherwise we'll run out of juice. 

We did learn today, thanks to Katey, that he can sing Twinkle Twinkle Little Star, almost in tune, aside from the fact he doesn't really know the words, but hey it's still impressive.  Cash is holding up well, considering everything he's going through.  He's not a big fan of watching the Olympics so during times when we're watching it, he's watching his girlfriend Dora the Explorer on my laptop.

Today we were visited by a family from Lynden whose son has a Peanut like Cash's, but in a different place.  We were blessed and encouraged by the visit and the father bought us a gift card to Tully's, the coffee shop of choice at Children's.  Every morning around 6:00 I head down to Tully's and see the other parents who need coffee just as much as we do, last night I woke up every two hours to change Cash's diaper so sleep was difficult to come by.

All that being said, my brother Jeremy reminded me today that after tomorrow, we're one session down and only 5 more to go.  That was a great, positive spin on Cash's treatment and with Katey's prayer during her visit we feel as encouraged as ever.  It's a huge blessing to have such encouraging friends and family during our discovery of the 'new normal'.  Here's a few pictures from the past few days, including Jack Jr's awesome time he's having at his Uncle Jerm the Worm's...Thanks for your continued prayers!!!

 

  

 

  

It's Not A Race...

Even though Cash hasn't started chemo yet (tomorrow morning), we realized today that this is not a race and we have to pace ourselves...The day started at 6:30 when we got to Children's and started the process of getting Cash into surgery for the Hickman port. At 7:30 I was in the operating room and they put him to sleep and we started to wait for the pager. However, at 8:30 just as we were paged, Jack Jr swung the Wii Remote too hard playing baseball and lost his balance, falling on a round table of all things...

We heard the cry from the room where we were waiting for the doctor and I come around the corner and my brother is carrying him, blood dripping down the side of his head. We rush him to the emergency room and the same lady who checked us in last Monday admitted Jack and we spent the next few hours getting the laceration near his eyebrow 'glued'. He was great until they tried to put the glue on and he absolutely panicked, however we got it glued and afterwards as he was eating a popsicle, he said to his mom, "I did great at the doctor's today!" :-) He's fine but here's a pic of the cut...

Back to the story...Cash was in the recovery room for many hours as they were concerned the port was bleeding a bit, however, we finally saw him around 1:30 and he's doing great.  The port looks good and there's no more bleeding.

Tomorrow begins the chemo and while we're excited to begin treatment, this is definitely a long process and I am praying for patience and longsuffering at the moment.  We are still hopeful Cash can beat this and tonight I taught him how to give me 'knuckles' - he giggles and that will my special way to tell him he's got to be strong.

Cash and Wendi are both sleeping and were were thankful for the visits today - as he starts chemo though I will become very protective of who sees him because he cannot get sick - so if you have a cold or anything don't be offended if I stop you at the door if you come to visit...:-)

We are continually thankful for the emails, blog posts, and visits and know that we may be calling on many of you throughout this journey to help us out - God is definitely carrying us through this time and I truly understand the Footprints poem now...have a blessed weekend!

One More Surgery

Well we are close to the start of treatment, however, the last step before starting chemo is a surgery tomorrow morning at 6:45 to have a double-lumen Hickman line put in. The Hickman line is inserted into a large blood vessel near the heart and there are two tubes that come out of Cash's chest that allows the doctors to give medicines, fluids, and withdraw blood.

We saw a sample of the tubes and they are about 8" long and will stay there until all chemo treatments are done. Each day we will have to clean the site, change the dressing, and flush the lines with heparin (heparin prevents clotting) - I will most likely be the one to flush the line because I'm not sure Wendi's stomach will be able to handle it.

After he leaves surgery we'll be admitted into the SCCA center at Children's and spend the next 4-5 days in the hospital with Cash as he receives the first round of chemo. The doctors and nurses will be monitoring him the entire time to see how he reacts to the chemo.

I went to work this morning and am so thankful that in my absence everything continues to run smoothly. Zion (www.zionprep.org) has an amazing team of teachers and administrators and it's one less thing I have to worry about on a day-to-day basis. I do miss the students and was the recipient of many hugs today. :-)

I'm taking my laptop and camera to Children's tomorrow and will continue to blog as much as possible. We are so grateful and thankful to everyone for your continued prayers and support, I may ask a few people to bring us dinner at the hospital...hospital food as many of you know isn't the best. (No offense Children's...:-))

Hope Lives

So we just got home from the series of 'meetings' - here's a short synopsis of the diagnosis, I will blog later but I know so many of you have been waiting (and we very much appreciate the support and prayer!):

Cash has a tumor which is referred to as PNET (or 'Peanut' as everyone is calling it) - it is a fast growing tumor but if you can refer to one tumor as better than the other, PNET is better than Glioma. There are only a handful of kids with this type of tumor in the brain stem, however, PNET is treated aggressively first with chemotherapy (and responds well to chemo), then radiation treatment.

On Friday Cash will have a port installed which will enable them to inject the chemo into his body, then we will start treatments either on Saturday or Monday. He will have chemo treatments for the next 18 weeks, then he'll have radiation (most likely Proton Therapy Treatments, or PBT).

We drove to Children's with hesitant hope, but left hopeful that Cash can beat this. Kids are resilient and our God is good so we are thankful to God and want to give him all of the glory!!!

I will post more but at the moment I am spending great time with our family and wonderful support system - Thank you for your prayers and please continue to pray that God works miraculously in this little one's life.

The Long Wait

Even though it's only been 7 days, it feels we've been waiting forever for the results of the biopsy.  Tomorrow afternoon (2:30 appointment) we will be meeting with the team of doctor's from Children's - at that point we'll have definite knowledge of what kind of tumor Cash has and what are the best treatment options.  Today we just played all day - in fact Avo (Grandpa in Portuguese), Jeremy and Gunnar came to Seattle to play with us.  Here's a great video of Cash and Avo interacting - Avo made Cash laugh and laugh this evening...



I will post tomorrow evening with the plan - We trust God to direct the doctors and believe that He directs all of our paths - I don't know what we would do without the hope that He is in control...

A Haircut & Smile

We found a small amount of laughter this past week when before Cash's biopsy, the neurosurgeon told us they would cut a small incision (about an inch long) and shave a small section around the spot - When we saw Cash immediately after surgery he had a 2+ inch long incision and a terrible haircut.  The neurosurgeon told us he wasn't known for his haircuts, which we were thankful he better at surgery than haircuts...Today I gave Cash a more even looking haircut, he looks significantly better:

He has improved each day since the biopsy which we are very thankful for - just waiting for the Wednesday appointments at Children's.  He still has a beautiful smile:

Today I am thankful for a wonderful family and friends - we have many days worth of food in our fridge and the visits from our family and friends has been uplifting!

Psalm 139

While I don't have much in the way of an update, I feel the need to write...A dear friend (Katey) handed me a piece of paper on Monday with a few Bible verses on it and Psalm 139 very much struck me.  The first 6 verses of the Psalm are:

 ¹O LORD, you have searched me and known me!  
²You know when I sit down and when I rise up;
   you discern my thoughts from afar.
³You search out my path and my lying down
   and are acquainted with all my ways.
⁴Even before a word is on my tongue,
   behold, O LORD, you know it altogether.
⁵You hem me in, behind and before,
   and lay your hand upon me.
⁶Such knowledge is too wonderful for me;
   it is high; I cannot attain it.

To me this is so encouraging - our God knows us, comes in front of us and makes a path for us.  This includes our son Cash.  This was connected by Pastor Mark's sermon today in which he said that God answers every one of our prayers with a 'Yes', 'No', or 'Maybe', but he does answer our prayers according to His will.  Now more than ever I am striving to understand that He knows Cash, well before we met him.  He has set a path for Cash and as verse 6 indicates, His knowledge is greater than I can ever understand - I have to trust God with his precious gift to us.

Four days after the biopsy, Cash has improved each day.  He still says 'mama', 'daddy', 'more', and hasn't forgotten how to tell his brother 'No!!!!'.  He's adapted to eating with his left hand (his right side has been affected by the tumor) and Jack Jr. tells anyone and everyone that gets near Cash that they need to keep their distance because of his stitches...he's very protective...:-)

Favorite Pictures from the Early Days

Here are a few of my favorite pictures with Cash when he was a newborn...I'll try to post pics frequently of Cash - I am biased of course but I think he's very handsome...

 

  

  

 

The Journey of Hope Begins

I almost don't know where to begin...this past Monday my wife and I took our youngest son, Cash, to Seattle Children's Hospital because we were concerned he hadn't fully recovered from what was diagnosed as torticollis.  Driving to the hospital we were happy and excited to get some sort of prescription for physical therapy to help his crooked neck.

After a few moments in the hospital room and the second doctor in as many minutes, we were told he'd need a CT Scan.  I took Cash to the room where they strapped his head down and took a brief scan of his head.  Still at this point I had no idea that in the next 15 minutes our entire life would change.

Fifteen minutes later we're told he has a growth around the stem of his brain and they would like to do an MRI that afternoon.  Multiple doctors came to the room and words such as 'tumor', 'cancer', 'growth', 'glioma', and 'cancer' started to surface.  It was at this point they checked us into the hospital where we were to stay in the 'SCCA' ward...when I asked what that acronym (one of many to come) meant, my heart started to sink even lower - it stands for Seattle Cancer Care Alliance...

Family and friends started to arrive (I will write at a later date how significant they were this week for my family) and on Tuesday afternoon we were told our precious little boy, 16 months old, has a tumor on his brain stem.  I still can barely utter those words and not break down so you can imagine how we felt just one day after taking him in for physical therapy (or so we thought).

The doctors did not believe his tumor fell into the 'classical' category so they wanted us to subject Cash to a biopsy on his brain stem to remove a few cells for further tests.  They explained that this operation was full of risks and they had never operated on someone this young and only do about 5 biopsies of this type per year.

On Wednesday Cash had brain surgery to take tissue samples to find out what kind of tumor he has, since this didn't fit the 'classic' tumor.  We spent the night in the ICU with Cash and while he had a 2 inch long scar on the back of his head the surgery was successful for all intensive purposes.  We finally went home on Friday and here we are waiting for the pathologists to finish their work.

Next week Wednesday we have our appointment with the oncologists, neurologists, radiation specialists, and a host of other 'gists' to discuss what kind of tumor he has and how to proceed to best treat our precious gift from God.

I think I could write a book about our emotions and event of just this one week, but I will use this blog to keep the many, many people who are concerned and praying for Cash updated on his progress.  A second purpose of this blog will most likely be for me to express our feelings and emotions of this significant and life-changing series of events. 

Our hearts ache for our son, who was a miracle in the first place, but (and as a pastor explained to me, but is a very important word in the Bible) we have an absolute faith in God our Father that His will will be done in Cash's life.  Many are asking what they can do to help, here's what I would ask:

Pray:
1. ...for a miracle that only God can provide;
2. ...for wisdom for the doctors and staff working with Cash;
3. ...for peace, courage, and strength for Wendi and I as we walk together down this road;
4. ...that we never give up hope, even in the midst of this tremendous struggle;
5. ...ultimately that God's will is done and that He is glorified.

I know that is a lot to pray for and there are many more I can add to the list, but that would be a great start.  We serve a God that is good and we do not know all of His ways and cannot even begin to understand Him, however, my faith is in Him and I trust Him with all of my life and the lives of my family.