Apples, Apples, Apples! Between the iPhones, the laptop and the iMac we survived the weekend! (He even licked and nibbled on a Fuji apple.) I thought I would show you Noah’s new office! While we sat around waiting for his counts to come back, we played with every widget, app and online game known to man. Low and behold, after 7 days at 0, counts started to climb. Yesterday, 300 – today 540! Movin’ on up! Lots of Poptropica, lots of Statetris (anyone with children from 2 to … well and “up” should play this game -)

http://www.mapmsg.com/games/statetris/europe/

I will now confess on this blog – this is how Noah knew all his states, countries in Europe, countries in Africa, countries in Asia and regions in the Netherlands by 3 years old. (Whew, there I said it. He was working on Japan, but Mom and Dad don’t know how to pronounce any of the places.) They have them for the iPhone too (another thing that every parent should have.) He would get the USA Today newspaper every morning, turn to the back of section A to see the weather, type different places on the phone to see who would be the coldest. I know now that Oslo, Italy is pretty cold this time of year, but Hong Kong and Sydney are nice!

We are supposed to start the steam cell harvest tomorrow. Lots more hair gone. Eyebrows gone. Eyelashes gone… again! I’m taking all of this as a sign that bad cells are dying!) I will keep you posted!

Thank you for the prayers – Pray, Pray, Pray

Oh yeah, Mom and Dad got a little crazy with gloves too! (Look at Lulu pigtails!)

In March, we will have been doing this for 5 months. That’s almost half a year! Wow.

Noah had a great day! No throwing up and lots of playing with “Mama” and “Dada” – mostly Dada today. (Mama is doing the night shift.)  Those are his new names for us… He says in a baby voice “Bebe loves Mama” and I say “Mama loves Bebe more!” This goes on for hours and I love it! He says “Mama, Bebe likes talking in the three person.”
I told him it was “third.” But he was close!

Thank you Lord for all of our blessings and Noah’s great day!

It’s Tuesday and we are out of Arnold Palmer and back in Gainesville.

Let me share some news that we are taking as really positive and encouraging. Ok, we were all shocked by the Feb. 12th MRI. So we, including Noah’s doctors, started asking questions and searching. You all sent me so much great information and I went through every bit of it and here are the results. Looks like there is such a thing as a “lag time response.”  This means that it is still working, just taking it’s time. We and Noah’s doctor spoke with her colleges from New York, Denver, Baltimore, Memphis, Portland – all over. She is wonderful. Some opinions were that the cells that we see on the MRI are the dead or dying, left over cells. Noah had a spinal tap on the MRI day as well. All of his previous taps came back negative – even in the beginning, but when they did this one, it was yellow. They were sure that it was positive. Guess what? Came back negative! Maybe the “yellow” was the dead cells being attacked by white cells. Noah is loosing more hair and eyebrows – that means something’s going on! Also, if this wasn’t doing anything, then it would have had 16 weeks to grow and he would be showing huge symptoms of advancement. He looks great and has gained more weight – 43.5 lbs! I’m praying that we are looking at dead cells that need to be flushed out!

Nothing is certain… all speculation, but Dennis and I (and the doctors) are very encouraged! So, we are going through with the stem cell harvest this week, take a week off and then do a more “middle of the road” chemo instead of the super intense. Then another MRI and we will evaluate. Should be around the end of March. The good thing about chemo is that we can start lower and work up. I guess God’s time wasn’t Feb. 12. Not my time, His time… Not easy to get through Mom’s head!!!

Oh yeah… want another baby miracle… (Dennis and I find it huge!) Yesterday, Noah and I were sitting together and he says, “Mom, I want an apple.” My head spun around, Dennis bounced off the walls… and we got him an apple. He ate a couple of bites and we had the first “no throw-up day” that we have had in months. That was the first bite of real food since Dec. 4th. Another miracle!

Alright, now the not so hot news… tonight Noah had a low grade fever so he had to leave the hotel and get admitted in the hospital. He was in great spirits and in my “Mom heart of hearts” I think it was just from the medicine that we have inject into his arm at night. When he has a real fever, he is flushed and cant open his eyes. I think this is just his bone marrow working overtime. (To do the “harvest,” they had to drop his ANC count to zero… yes ZERO!… and then when it was on it’s way back up, they harvest the stem cells.) My tough baby. He was so smiley today. So, he and Daddy are in the hospital. Mommy couldn’t go because she has a stuffy nose.

So I blog to keep me from going crazy!

ps. Did I tell you that Landin “shaved” her lip with a razor? Not pretty… we thought she had lipstick all over her face and sleeve … nope. Blood. Lots. And she didn’t even know it. Thank goodness for those icy-pops!

Dear Lord, I pray for Landin tonight. Please give her strength and comfort while we are gone. I pray for my Noah tonight. Please hold him through this process. Please make the stem cell harvest painless and successful. Please give us patience, peace, direction and clarity. Please kill the “bad cells” and remove them from his body forever. Let this all become part of his character for when he is older. I ask these things in Jesus name, Amen.

When I was a teenager, a peaceful Friday night would have been awful!

(No comments Nan… my Mom reads this blog! hee hee

Now, it could not be more perfect!

We are still in the hospital. I’m sitting in the dark… watching baby boy sleep. He has lost more hair. Good news – his fever is gone… let’s pray it’s stays that way.

It’s really peaceful.

He just woke up to go potty. (He has started throwing up as soon as he starts to go in the urinal. We were perplexed. Dennis figured out is was from the smell. Now… he holds his nose before he “tee tees”.) I helped him go and as I was putting him to back to bed he mumbled “I didn’t deserve that…” I said “What sweetheart?” He was talking in his sleep. He does that a lot. A lot. I sang him back to sleep to get his brow unfurled.

Dennis went home… he will get to sleep in a bed and see Zaza and Landin. I got to see them last night and some today. This morning I asked Landin why her lips were blue. “Icy-pop Mommy!” “For breakfast??!??” I scowled. Zaza said “No… it was after breakfast dessert!” Landin grinned from ear to ear! It’s amazing what a visit and a shower can do.

Thank you for all of your information. I have read every bit of it and have talked to numerous people!! I hope to have some interesting information to tell you tomorrow.

And now I’m back to my peaceful evening. Sitting in the dark. Thank you dear Lord for this silent, peaceful night. I’m going to say my prayers and go to bed. Good Night!

Noah had surgery Monday. We came home late Monday night. Tuesday, my wonderful neighbor Jill sent 2 angels over to sterilize my house. Thank you Jill – it’s not the same house – you don’t know how bad it is until it’s clean! I don’t know how to thank you or the angels!

Last night, I was in the office working when Dennis poked his head in and said “get in the car!” I grabbed my shoes (still in my pajamas – sweats thankfully) and jumped in. Noah had blood all over his side and back – down to his waist. It was coming out of his new apheresis catheter (this is connected to his jugular and hangs on the outside of his body.) Long night. Were admitted into Arnold Palmer now. He has a fever. Lots of torture cleaning and redressing his chest. (The entire time that Noah is screaming in pain at the top of his lungs, he is also apologizing for “having unacceptable behavior!”) He’s amazing… and I told him to stop apologizing and let it out! (In my head, I wish he could kick someone – just once!

We are ok now. Please pray for our baby.

I’m done being sad (for today.) I have broken down, cried, yelled, asked my “Why’s” and mourned for the past 2 days and I need to have good great, positive energy for my son.

We are on a path… on a journey. Not all journeys are easy.

Thank you for all of your wonderful information and your prayers. We know that this has been devastating to all of you as well. Cancer (the devil incarnate) wants our hearts and minds to spin out of control  - and mine did; we are human. It will not break us!

When I say us, I don’t only mean myself and Dennis. Tonight, I met Jamie. Jamie is the mother of Charli (Charlotte) and 2 sweet boys; they are from Valdosta, Georgia. At 4 1/2 months, Charli was a laughing, smiling baby until one day on the changing table. Her mom realized Charli couldn’t look at her. They went to the doctor, she was given a shot (they told her that she may have an “infection”) and sent her home. Charli’s father was beginning his 72 hour trip home from Afganistan. After landing, hours late, his commanding officer came aboard the plane and told him that his baby and wife were waiting for him at the hospital. Baby Charli was diagnosed with a brain tumor – same as Noah.

Jamie and I talked for a long time tonight. She told me of all of the families that they have met while she and Charli have lived here. Children that have survived, children who have passed. As she is telling me this story, she is nursing baby Charli. Minutes later, Charli proceeds to throw up all over – same as Noah. We compared notes. So many similarities and side effects. This is a nasty, evil disease that wants to live. For Noah and all of these babies, we have to stay strong.

God, please grant Dennis, Noah, Landin and I strength. I pray for all of our family members. I pray for everyone reading this. I pray for Dr. Smith and her team. Give us all strength. Give all of these children and their families peace and strength.

Noah is having surgery in the morning to put in another central line to collect his stem cells. The journey continues!

Psalms 23:4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

Happy Valentine’s Day

If anyone can find anything about radiation resistant Medulloblastoma, that would be great. I can’t.

I am just going to say this as best as I can.

The chemo and the radiation did nothing. The cancer is still in his brain and “train tracked” up and down his spine. His treatment has changed. There is only one more thing to try and we will know if it is going to work by the end on March. If not, we will stop after the end of March. The new treatment is brutal and there are high risks of him not being able to handle it.

Our sweet baby. This is not fair.

We are headed to Gainesville right now.

Noah’s MRI starts at 9:00 am tomorrow.

We feel so blessed to have all of you on this journey with us. Praying for us – rejoicing and suffering with us. We can feel your support and like I have said before, your comments lift us up. Thank you. We too pray for all of you. We know Noah is in God’s hands. We have turned this over to Him and we are finding strength through Him. Thank you all!

Please Pray that the MRI is completely clear of any signs of cancer. Please pray about “phase 2″ – no hearing loss and no kidney or any other type damage. (I’m praying that he doesn’t even have to do it.)

Dear Lord – I pray for my son. Hold him, protect him, give him strength. Kill every cancer cell in his body for the rest of his life. Protect him from all long term damage. Protect his spirit. Heal his nausea, heal his pain. Thank you for our blessings. I ask these things in Jesus name. Amen.

Philippians 4:6-7

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

My “t minuses” are off by a day I think – This is t minus 2! It’s only 2 days from now!

Let me tell you about my amazing husband. This man is a better businessman, homemaker, nurse and parent than I will ever be. How many mothers and fathers can be interchangeable in their children’s lives. In our case, Daddy is as comforting as Mommy. I am so blessed to have such an amazing man in our world. Gentle, caring, strong… but now needs prayers. Dad’s are supposed to fix things. Dad’s are here to protect and never let harm close to his family. Mom’s have a different strength. Son’s want to be like their Dad’s. My sweet Dennis needs some prayers tonight. Dad just had to tuck Noah in and explain why he couldn’t stop the tumor from growing. Dad just had to explain why he couldn’t protect him from all of this. (I was listening over the monitor.) Dad needs prayers. I love you Dennis.

Noah is amazing!! We were on I-4 today and Noah says “This is the road we took to see ‘Walking with Dinosaurs!” I said “You are right!” He said, “And Mom, this is the same road we took to have my shunt checked” … Mom – “Yep Noah, you got it!” Noah – “Wow… Mom – I bet my tumor misses this road. It got to do a lot of cool stuff. I wish I could have talked to it and touched it . I would have asked it a lot of things.”

Me too Noah… me too. Whew.

Please Pray for Friday – the MRI is completely clear of any signs of cancer. Please pray about “phase 2″ – no hearing loss and no kidney or any other type damage.

Dear Lord – I pray for my son. Hold him, protect him, give him strength. Kill every cancer cell in his body for the rest of his life. Protect him from all long term damage. Protect his spirit. Heal his nausea, heal his pain. Thank you for our blessings. I ask these things in Jesus name. Amen.

Philippians 4:6-7

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

(For those of you that don’t know – this is inside the “Pray for Noah” green bracelets.)