Update

Our little 4 year old friend has Lymphoma. Please continue to pray for her and her family.  I know they are still in shock and still trying to wrap their heads around the fact that their world has forever changed. 48 hours ago they thought they were dealing with simple belly pain, tonight they are dealing with pediatric cancer. Our family knows this grief and shock all too well.  I remember every moment of those first few weeks and they are definitely some of the most difficult they will face.  Please, please pray.

Thank you,

Whitney

Urgent Prayer Request

Friends of ours here in Charleston  just learned that their youngest (5th) child who is 4 1/2, may have Lymphoma.  They are currently waiting for biopsy results to determine whether or not this is cancer and if it is, what type of Lymphoma.  We are gathering all resources to ask for prayer. So many did this for us almost 2 years ago.  Thousands were lifting up our Forester!  It was the greatest blessing of our lives.  Will you do the same for this precious little girl and her family?  *I will share more about them if I get permission to do so.

God's bring your healing power and your perfect peace!


Thank you,
Whitney

Halloween Pix! :)

painting pumpkins with grandma

preparing for the craziness ahead...

Craziness! But so much fun with friends!

my Star Wars kiddos

Trick or Treat!

Joshua YODA! (minus the hot annoying mask)

Slade's 1st time to Trick or Treat

She likes it!!

Grandma is ALWAYS festive!

Staci with Yoda & Ewok. :-)

Bye Bye Port!

(sorry, to re-post but there was a huge typo I just had to fix. The gas alleviated his anxiety not elevated! Ok, now I can sleep tonight..)

Last Friday's surgery went really well. We had to do a lot of waiting beforehand due to two pediatric emergencies but other than that, Forester did fabulously. He was put to sleep via gas before the IV was placed which alleviated a lot of anxiety and he had no pain when the IV was removed. Thanks for your prayers about that! He was a little sore when he awoke from surgery but morphine helped and he felt fine by the time we got home.  He hasn't had any pain meds since!  Not even tylenol. In fact, we went bowling on Saturday night to celebrate Micah's birthday and he was able to do that without any problem or pain. His stitches dissolve and we can remove his bandage tomorrow.

Micah had a wonderful birthday and everyone enjoyed dressing up for Halloween. Darth Maul (Forester) , Aniken (Micah) and the Ewok (Slade) looked great! Slade received one piece of candy and was practically running to the next house for more. Fun for all!
...And now onto Forester's 9th birthday on Sunday! (whew!)


*Here are some pictures from last weekend's events.  ...I've been struggling with blogspot & these pictures for hours. I'll have to post Halloween pix separately. Stand by...

waiting & waiting...

All done!

BIRTHDAY!

Baby Micah

SIX!

Pinata loot!

 

Scooby Dooby Doo!

The day is almost here!

Tomorrow is Micah's 6th birthday!!  How can this be possible?! It is also a very special day because Forester will be having port removal surgery! YAY! Forester was very excited about this...until last night.  During dinner he mentioned something about after his port was out he wouldn't have to go to the hospital anymore.  I corrected him and said, "well,  you'll still have to go for blood labs from time to time and still have MRI's every 3 months for a while".  He was very upset. Removing the port to him meant it's all over. It was heartbreaking to see the realization on his face that this is not the case. Then began the anxiety about having to get stuck for those procedures and he said, while crying, "I do not want to get my port out!".  It broke my heart that this happy milestone has now created sadness and anxiety in him.  I held him while he cried for a while and then we talked it through and he feels better about things now. But, please pray for him that he will have peace and not be afraid of future hospital visits.
  At his last check up his weight was up to 66 lbs and his height was 4'4". Great news! But Pete and I have both noticed that once again his appetite has begun to decline.  He's only had a couple vomiting episodes this month which we think was related to eating too fast so that is a big improvement.  It really seems that we're controlling the nausea issues but he needs a boost in his appetite. The megace effect is gone. Less and less is sounding good to him. It's a fight to get him to eat breakfast and he brings most of his lunch back home in the afternoons. So, keep praying about that. Thanks. 

We'll keep you posted about tomorrow's surgery.  We still haven't heard what time the surgery will occur.  So, just say a prayer for our little guy when you wake up tomorrow.  :-) THANK YOU!

Another Update! :-)

On Friday we arrived at clinic early without allowing Forester to eat as is required to test his cortisol level. Testing his cortisol is  a simple blood test and it was added to the rest of his routine blood labs that were ordered. After they took his blood he was able to eat so we went downstairs, & brought up some food for Forester to eat in the clinic.  He proceeded to eat some eggs, grits, a biscuit, bacon and a pack of Nekot peanut butter crackers!  Now, before you go gettin' yourself all excited there is a bit of information I neglected to to tell you in my last post. About 2 weeks ago when Forester was barely eating, Pete & I decided to start giving him Megace again. This is an appetite stimulant that he has been given over the last year and a half when his weight has gotten too low. This stuff works but tastes disgusting. Anyway, we only had a little bit left so he received about 5 days worth. We called the clinic to ask them to call in a refill and they kinda freaked on us and said no. We were told that Megace is only to be used during chemo treatment and he can't have it anymore.  It turns out this drug can have some substantial side effects and it shouldn't be given unless absolutely necessary. Also, since Forester has been off of treatment for 3 months now they want to know why this is happening - not just treat the symptoms but find the root.  But, like I said this stuff works. For the last week or so Forester has been eating a block of cheese a day. I am not exaggerating. A BLOCK of cheese a day & snacking on other things throughout the day. Major improvement. But, I think we shot ourselves in the foot because at clinic they raved that Forester's weight was up 2.2lbs and rejoiced in watching him devour that breakfast! I kept mentioning that these things were related to the Megace but I'm not sure they heard me....but oh well.  The cortisol level came back not just normal but "great" and all of his other blood counts looked really good as well. For the 1st time in 18 months Forester's red blood cell count was at 11 (normal)! HAPPY!  I guess this means we're back at square one with the appetite stuff once the Megace effect wears off but I am thankful that his cortisol is normal and that his body is doing what it is supposed to be doing. Our new regimen will be Zofran & Zantac in the morning & Prevacid and Zyrtec at night.  Forester's blood labs did indicate seasonal allergies & that can contribute to stomach upset sometimes. So that's where we are on that.

Yesterday was MRI day and our little man did great. He was so patient as the wait was long and boring as usual. Not one complaint! Sedation and wake up went fine and then he headed back to school.  Seems so weird to have your child under general anesthesia in the morning and then studying at school in the afternoon, but I digress... We received a call today that the scan looks "fantastic" and we will talk about scheduling the port removal surgery at his next check up in October. WOW. We are thrilled beyond words!!! Thank you so so much for your thoughts and prayers for us.  We are so thankful for you and your love for our family.  And a huge thank you to some of God's angels here on earth, Staci McLain, Mary VonRosenberg, & John Fortney who helped in big ways yesterday so Pete & I could both be with Forester & hear news about the scans right away. God bless you!!

In other fun news, on October 1st Forester & our family will be attending another Braves game! Coach Glenn Hubbard asked Forester to come back and once again enjoy batting practice & some other fun stuff now that he is feeling well enough to really enjoy it. This man has been amazing to us and has such a servant's heart. Forester can't wait and neither can we!

Thank you again for your prayers and as always we'll keep you posted.
Love,
Whitney

Update on Forester

Thank you for your prayers for us. Things have still been tough when it comes to Forester and food.  You all have asked several questions and given suggestions which we appreciate so much. I will try to answer some of your questions here.
It is difficult to explain exactly what is going on with Forester... Generally, he doesn't feel nauseated. Though frequently (at least once a day) he'll stop in the middle of eating something, spit out the food, gulp down some water & say "I can't eat anymore of that or I'll get sick".  But, then he may wander over to the pantry, pick out something else & start to munch - sometimes not.  The vomiting usually comes as a surprise. It's not like the instances above but just "all of a sudden" and a lot of times it's before he's even eaten anything.  I still describe Forester as being like a 1st trimester pregnant person with morning sickness.  If you've had it you know what I mean.  He's hungry. He decides he wants lasagna. I make the lasagna. He looks at it or maybe even takes one bite and says, "I don't think I can eat this. It doesn't look good/taste good to me. Can I have something else?" I say, "Ok, what else would you like?" I proceed to name & search for everything we have.  Sometimes we find something else and he eats it!  Sometimes we never find anything that sounds good and he complains that he's hungry but there is nothing "good" to eat.  Sometimes I make something else and then the exact same thing that happened with the lasagna happens with the next item and we do it all again.  I get exasperated and frustrated & I'm not very good at hiding it.  I know Forester feels bad & doesn't want to tell me that he "can't" eat what's in front of him. :-(
An example of a day of eating a week or so ago was this: a cup of dry Fruit Loops for breakfast, a mixed fruit cup for lunch, 2 bites of chicken & 2 bites of mashed potatoes for dinner, a couple handfuls of Doritos. That's it.  On occasion he'll have a day where he eats like a normal 8 year old boy. It's not predictable & not consistent so we can't really figure out why a normal day is normal.  He has quite an aversion to sweets so things like milkshakes or smoothies for breakfast, things we could sneak extra calories or protein into, just don't appeal to him.  So...it's a challenge.

Now, on to some good news. One of the leaders of a non-profit organization that helps cancer kids, called Courageous Kidz, emailed other moms to see if they had any insight to Forester's issues. One mom whose son also had Medulloblastoma recommended getting his cortisol level checked.  Hmmm.. A couple days later I had a really good 20 minute conversation with one of the nurse practitioners at the hospital.  She really listened to me as I explained what was going on and she also suggested having Forester's cortisol level checked. So, tomorrow morning we'll be doing that!  Regardless of the outcome, I am thankful that we are being heard and that something is being done to try and figure out what's going on. So, thank you for praying and  keep it up!

Forester will also have another brain MRI on Monday morning. Same routine as always - under general anesthesia, usually takes all morning & requires a lot of boring wait time for Forester.  Please be praying for a beautiful and clear scan report!!!

Prayer Request For Forester

Forester has been doing really well! He is adjusting to school and life in the 3rd grade. Just a reminder that it is such a miracle that Forester is in the 3rd grade after missing half of 1st grade and half of 2nd grade due to cancer.  God is good! We've had a wonderful and normal summer and good check ups at the hospital.  In fact, we were told at his last visit that if his next MRI on Sept 13th comes back clear then we can schedule his port REMOVAL surgery! This is the port that was surgically implanted under his skin on his chest that has been accessed to administer chemo, fluids, blood transfusions, etc. And though it was a huge milestone for us when Forester reached the ends of his chemo treatment, I think for Pete and myself this is an even bigger one.  Having his port remain for a while has kind of been code for "let's wait and see if the cancer comes back - we may still need that." So, to remove it is a great confirmation that he is in the clear!  Please be praying for this scan on the 13th, that it will beautiful and perfect.
I'd also like to ask you to pray for Forester's appetite. According to his doctors he shouldn't still be having problems with vomiting and food aversions. But, he is. It seems he still has a random vomiting episode every couple of weeks. He is still taking Zofran once a day. He is still very particular about what he will eat.  It's a daily struggle and though it is small in comparison to everything else that has come our way, it is still difficult.  Everyone needs to eat.  Several times a day.  For me, this means some level of conflict or frustration several times a day.  In reality, Forester hasn't been eating much at all and is losing weight again. I am unsure of what to do about this on a daily basis. Will you please pray that God will grant me wisdom in this and an even temperment? And, also pray for Forester's system to balance back out so he can once again have a normal relationship with food?

I knew you'd say yes! :-) 

Thanks and love,
Whitney