Saturday, April 30, 2016

Home Sweet Home

Well. I was able to switch my flight after all! So I flew home Wednesday, and hit the ground running. Ben was back at work, there was grocery shopping to be done, and life just keeps going. By God's grace, even with the fastest turn around I've ever done....I am doing okay! I was able to get some stuff done. Everyone who is praying and thinking of us: THANK YOU. There is NO way I should even be functioning right now. And yet, it has really, truly been wonderful. I'm so thankful for the good news of this last trip, I'm looking forward to five weeks with the kids before I return, and I'm doing my best to soak up every second with them. 
Now. After a wonderful day, I'm ready to close my eyes, and admit that I am a mere human in need of rest, in the hands of the God who does not sleep or slumber.

Tuesday, April 26, 2016

A Giant Leap for today....

Elijah did great last night! He went to bed around 10pm, got up at 1:45am to nurse, and then slept until about 4:45am. We decided to go ahead and get up and start walking. :-)
We walked the streets of NY until we could head to the hospital.  
Elijah had been waking up at night, screaming and thrashing. He was pretty inconsolable.  I finally mentioned it to his nurse, so she had me meet with the anesthesiologist before Elijah's exam. We agreed to try a new "cocktail" and see if it helps him.
The last visit, they had told us to plan on doing two rounds of Intra-arterial chemotherapy.  When the doc came in he said that his tumor from last time was gone!!!! (Now, that means they can't measure it....there could still be live cells, but only time will tell.). Because of the great response, they gave us the option of doing another round of IAC, or doing nothing.  The doctor did explain that we've done this before-one round of IAC, then ended up having to laser most months until finally coming back to IAC.  He said that we don't usually get away with just one round....which is what we have done this time.  But when I asked him what he would do, he said, "I'd probably do nothing."
So with joy, Ben and I have decided on no treatment this time.  We will wait and see, knowing that there is a good chance there could be regrowth in the future.  And, if we get to this point again, we will be committing to at least two rounds of IAC.  But I just felt strongly that his little system could use a break, and since the tumor *seems* to have died, then I feel comfortable waiting and seeing what happens.  
We come back in 6 weeks!!!! I'm freaking out! This is awesome!
AND! He woke up from anesthesia so much better this time!!!  We will see if it helps with the night terrors, but I am so thankful!!!!! :-)

Monday, April 25, 2016

We made it!!!!

I'll admit, I was a little nervous about a nonstop flight, because....what if that meant nonstop crying for 5 and a half hours????
And, it had some moments.  :-). But overall I consider it a fantastic success and I LOVED the nonstop flight. We even landed almost an hour early. So it was very similar to one leg of our normal flight, only I didn't have to do the whole thing all over again!
A longer drive into Manhattan from Newark--but Elijah seems to do better in the car than the plane. And what a treat to get to the RMH before 3pm!!!!
Thank you everyone, for praying!!! We are so thankful and so hungry! Time for a "snack." :-)

Waiting to board....

Here is Mr. Grumpy, enjoying some yummy bran muffin while we wait to board our flight.
This is our first time flying a direct flight into Newark. 
Although he looks pretty happy in the picture, he's already been quite the handful and we haven't even boarded the plane.  Thank you to everyone who is praying for us!!!!! 

Wednesday, April 20, 2016

Psalm 8

https://soundcloud.com/user-450515923/psalm-8-at-ccsb-the-well

This is the audio from when I recently taught on Psalm 8. It requires a free account with soundcloud, but was the best way to upload such a *large* file.

Wednesday, April 13, 2016

If you're watching "The Truth About Cancer"....

Well, you might be mad at me for this post.  But it is just the opinion of a momma with a baby with cancer.

I think everyone can agree that cancer is a ruthless, vicious enemy.  And while we all long for a cure for this beast....I have a few issues with the documentary series.
1.  Not all cancers are the same.  So, to lump them all into one boat about "cures" is irresponsible at best.  (I do know that the series will differentiate at some points, but it frequently lumps all cancers together.) There is a big, and I mean HUGE difference between basil cell carcinoma and melanoma.  There is a big difference between pancreatic cancer and breast cancer.  There's a big difference between stage one and stage four.  And don't even get me started on the difference between childhood cancer and adult cancer.
These differences are really important to keep in mind when you are looking at treatments.
2. It is unkind and unfair to lump all doctors into the same category.  Or to lump all conventional treatments into a boat and call it "Big Pharma."  Trust me.  Not only do I personally hate to take medicine of any kind, I will be the first in line to advocate that we need better treatments that are less toxic.  But there is a danger on the line just as great, if not greater, than the poisonous, toxic treatments available.  And that danger is forgetting the enemy we are facing. Denying its dangerous and destructive power.  There is not a mom (whose child has cancer) in the world who doesn't wish that we could downplay the strength of this destroyer, and pacify its verocity with herbs, plants and green juice.  And we all still try them, believe me!!!!!  I have been amazed at the lengths these mommas will go to for their children with cancer. These moms and dads are some of the most educated people on the planet.
And it's not like we aren't aware of the toxicity of the treatments.
But the statement made in episode 2: "Cancer doesn't kill people, the treatments do."
Not only is this an outright lie, but I can only tread lightly as I say that I have seen the scans of a toddler's brain being overtaken by cancer.
But once again here, this is where the difference between childhood cancer and adult cancer has great impact.
Cancer does kill people. This is a fact that we parents of children with cancer can never forget.  And while treatments are toxic and terrible, I can only say for myself that without surgery and chemotherapy, my little boy wouldn't still be here, and he wouldn't be able to see.
And while I am not naive to industry and doctors who are all about money or are quick to prescribe medicine....let me just defend every doctor that has been part of Elijah's care from day one.  They haven't done everything right, they haven't always been on the same page with me...but NOT ONE of them wanted Elijah to have chemo.  They all exhausted every other option first.  No oncologist ever used "scare tactics" on me to try and get us to choose chemotherapy for Elijah. 

So, while the documentary series compares chemotherapy treatment for cancer to "sending in NAPALM to take care of an ant problem"....I have an issue with comparing my child's cancer to an ant problem. This isn't ants we are talking about people.  We have to remember the enemy we are fighting.

I'll leave it at that for now.  I do want to say that I believe there is some good information represented in the series.  I wish that it had been presented differently-with more respect to the doctors who are fighting diligently and searching tirelessly for less toxic treatments. I believe there is a way to advocate natural methods without discrediting the work of so many doctors.  (Calling them uneducated because they don't know "chemotherapy is a huge fraud."). 
I believe that we are to do everything possible to steward our bodies the best that we can.  But I also know that Elijah doesn't have cancer because of his diet, his environment, or because of "treatments" he had gone through.  He has cancer because his genes told his body to reproduce cells uncontrollably with a mutation. And that genetic mutation was lovingly sifted through the hand of my Good God.

And so.  I'm not saying you shouldn't watch The Truth About Cancer.  In fact, I'm watching it. But I'll watch it the same way I would anything of this nature-pen and paper in hand, noting doctors names, hospitals and treatments mentioned, reports cited, etc. And then I pray and research and pray and research some more.  

I'll close this by agreeing with the series:
"We must be educated."
Yes. Amen. 
But that also means you can't just take the word of a guy who has begun with his conclusion in mind.  
And I'll agree with him one more time:
"There are true answers for cancer."
Yes. There are. And every answer begins and ends with Jesus.  There are wonderful things that we can and should do for our bodies to prevent disease.  But there will also be times when you aren't able to prevent it. Like when your baby is born with cancer.  And even then, Jesus is still the answer, and He is still working towards that glorious end when He will make all the wrong things right.

3 year old girl....

Dear Evelyn Hope,
   Oh, my sweet baby girl. There are so many ways in which you have changed me forever.  I was on bed rest almost my entire pregnancy with you.  I think in some ways, it made me appreciate you so much more because I felt like I had to "fight" for your life. And the only way I could fight for your life was by resting and trusting in God.
  Wow. I sure did need that lesson! :-)
     You are so much fun. You are petite, and for the longest time, I didn't think your feet would ever grow.  But they did. Your slender, elegant feet fit beautifully in your ballet slippers.  When we went to see The Nutcracker Ballet at Christmastime, it opened up a world of love in your heart.  I absolutely love watching you dance. You are so fortunate to have an older sister. Someone who has gone before you, who knows more about the hardships of this life....but still dances beautifully.
    You play hard with your brothers too:
     You are very serious about doing your "schoolwork", although you already know your letters and can count...I don't know, at least to 30 but you sometimes leave out one of the teens. :-)
     You are a warrior princess.  I pray that by God's leading, you will learn what battles to fight, and what ones to let go of.  If you find that you are fighting primarily for your own gain, then it is time to rethink the battle. If, however, you find yourself fighting for what is right and true, if you find yourself fighting to keep light and beauty in the world, to take care of those who are not able to stand up for themselves at the time....well then, that is a battle worth fighting.  Not only do I pray that you would learn which battles to fight, but I also pray that you would learn how to fight.  We live in a world that is captivated by light sabers and other weapons.  But this world knows little about the most powerful weapons: the Word of God, held up strong and steady through prayer.  A momma, sister, friend, wife-warrior learns that our struggle is not against flesh and blood. Many times we are so angry and frustrated with a face in front of us.  But be very careful.  While people can be very difficult and frustrating.....there is always more going on than we can see. Behind a hard face and a hard heart is often more pain than we can imagine, and it requires compassion and empathy in order to navigate those relationships gracefully.
     I guess my encouragement for you, my sweet and spicy 3 year old is this:  keep fighting, and keep dancing.  This life is filled with a symphony of songs: some upbeat that will have you whirling and twirling through the most amazing moments you couldn't dare to dream of. And sometimes there will be slow and sorrowful tunes that you didn't expect and don't feel like dancing to anymore.  
     But the secret to the "fight" and to the "dance" is really one and the same: 
Rest in Christ.
Trust in Christ.
     Be looking for the faithful ones who have gone ahead of you. They have danced to songs you haven't heard yet, but they will help you along and teach you some new moves.
     There is no song that will come that Christ has not heard- and yet He turned each note, each melody into an offering of worship to the Father.  If you dance with Jesus, you will please the Father, because the Father is forever pleased with His Son.  As I have clung to Christ, feeling as if I am tossed here and there by the music, I find that He is the best partner.  He never, ever lets go of me.  And He won't let go of you either.
     I love you baby girl.
Your happy birthday train ride at the zoo.
The animal you chose: the scarlet macaw.
Happy birthday, my beautiful ballerina.

With love,
Mommy








Tuesday, April 12, 2016

Still in shock....

Yesterday was Elijah's blood draw to check his counts since chemo.  They had already warned me that since testing positive for the flu, it could take longer for his counts to recover-so we were even prepared to have his next appointment postponed.  
To give you an idea....an absolute neutrophil count below 1,000 is considered neutropenic. It is more difficult to fight infection when numbers fall below 1,000.  Below 500, and you are at risk for infection just by the normal bacteria that exists in your mouth and gut.
Last time Elijah had intra-arterial chemo, his 10 day counts were below 650.  And a week later, they had dropped below 550.  Just when we were considering shots to help his counts recover, they went up to 900, close enough to 1,000 for him to have his next exam under anesthesia.
So this time, we were prepared for worse. When his counts are low like that, a fever would mean 2 days in the hospital.
Well. After a little bit of confusion on his results....his absolute neutrophil count came back at 2,800.  This is UNREAL.  So crazy that I emailed all of his doctors to make sure this was even possible!!!!

Thank you all for praying! We are just rejoicing in this amazing blessing!!!! :-)
Elijah is pretty stoked on this news. :-)

Tuesday, April 05, 2016

Late night...

Elijah still hasn't had much of an appetite since his Intra-arterial chemo procedure on Thursday.
I finally went yesterday and got some things to juice for him:
But by the evening, he was running a fever so we were instructed to take him to the ER.  That is one of the frustrating things about Elijah's situation--he has amazing doctor's on both sides of the country, but in a situation like this-is this an issue for the pediatrician? The oncologist?  Elijah is sort of in no man's land.  After calling CHLA, the on call oncologist felt that we should take him to the ER in Ventura.  Since Elijah is seen by a CHLA doctor here in Ventura for blood draws after chemo, we also spoke with him. 
    Now the big question: had Elijah's counts already dropped? Or was he just sick??  
     They took great care of us at the hospital, knowing that Elijah could be immuno-compromised.  We did the various pokes and tests which are so hard on such a strong guy.  He got some IV fluids, but in general, just wanted momma to hold him.
     At the end of it all, we were discharged with good news and bad news.  The good news is that at this point, his white counts look pretty good. (We don't know what they will do from here, but right now we are good shape.). The bad news is that he tested positive for the flu.  Not really a great time to have the flu, since his counts may or may not stay strong.  But the doc will prescribe something to help him recover more quickly from the flu. Hopefully we can get him eating and feeling better soon.