Noah…may the force be with you!

Thank you for your continued prayer and support. It took Noah four transfusions (2 blood and 2 platelet) and he began to feel much better. (I thought… I think I could use some! He is still very nauseous, but that’s ok. I’ll take that. Last Tuesday at clinic, we were praying for a high ANC count of at least 1,500 to 2,000. The Friday before, it was 88, and for 2 weeks before that, it had been 0 – zero, zero, zero. We were trying to plan Landin’s 3rd Birthday around him feeling well. His counts came back… ready… 19,272!!!! What – 19 thousand!!! Praise be the Lord!!! I called Dennis and told him the birthday was on!

We went “camping!” (Well, as camping as Disney’s Ft. Wilderness cabins Hey, we still needed air and a plug for “tubey.”) It was such a blessing! We had a small family birthday party for Lulu  - baby girl is 3!! (Her birthday is really 4th of July… just like my Grandma Sugar and Dennis’ Grandma Sandei. Three amazing ladies!!) The kids rode ponies, had a carriage ride, bunk beds and a golf cart – what could be better! “Mom, camping has 2 TV’s!!”… well…er..this camping does Noah.

Here is some of the joy:

Please pray for Noah. We have been admitted into the hospital tonight. He is extremely weak and has a fever. He had to be accessed again. It’s 12:30 and we are getting ready to start a blood transfusion and after that’s platelettes transfusion. My poor baby boy – we thought this time would be eaiser.

Dear Lord – please help my son tonight. Give him peace. Let him not be in so much pain. Amen

Noah and I are sitting outside and he just asked “Mom, when a pinwheel spins, why does it look like a total circle and where does a black hole lead to?” …. Anyone???

Just heard from Dr. Smith and I quote “Hi there, just wanted you to know Noah’s CSF (spinal tap) showed NO TUMOR CELLS!”

Thank you for your prayers! Thank you, Thank you! Thank you Dear Lord! We are blessed!

This is going to be a little confusing, but we, again, are taking it as good news. Nothing has changed; the small tumor in the spine may be a little more deteriorated. The thing that had changed is the protein count in the spine. If there is active tumor, the numbers are super high. At one of Noah’s MRI’s they were 580 ish, (which still could have been ‘lots of dead cells) – now, it’s 157. This is a great thing!

Without doing a biopsy, we don’t know what we are looking at. Everyone concurs that the cells very well could be dead and the risks outway the benefit since he is doing so well on the lower dose. There aren’t even enough to get a good biopsy.

So, we are going to continue on the course – lower dose chemo, cutting out one chemo totally because of his grade 3 toxicity hearing loss.

Here are my positives: Chemo will be less hard on him, so he will recover more quickly; we will continue for 2 to 3 more months and that’s it for the chemo! (I’m not going to count my chickens yet – but this is the “today” plan.) If his last chemo is around Aug. 1st, he would be recovered by his birthday!! And be back in school! Who knows – maybe eyebrows and hair!!! (Ok, so I’m counting chickens!!) He will continue with the high dose Accutaine, for awhile. (it has been shown to kill Medulloblastoma cells – I don’t like it at all, but I hate cancer too!!)

We are in the car now… Coming home.

Thank you for all of your support and prayers!!! Miracles are happening!!! Thank you, thank you!!! Dear Lord thank you!! We are in your hands. May this journey come to a glorious end with Noah free and clear forever and Noah’s Light Foundation in place to end this for all children – forever!!!!

Have a great evening!

You know, when you are on a roll (and you have the stress of Tuesday looming)… why would you leave the Happiest Place on Earth?

Sunday we get up, slowly, and he can’t stop talking about his great day. So, Dennis and I monitor the situation. No fever… throwing up, yes…but that’s “normal.” At about 4:30, we decide that we can either stare at each other and count the minutes until Gainesville or do something…so we did. Not original, but we figured we have had so many bad “Groundhogs Days” that maybe we now have a good one. Back to Disney we went.

It was so magical and it started in the car. Noah asked for Disney music in the car! The children sang – together!! We all sang!! (Flashback to summer, 2009!!!) They ran and played, Noah conducted to all of the music like he did the day before!  The children were laughing together!! (This has been a battle! Noah has hated her health this entire time!)

More characters, more music! I couldn’t let it go – I called from the Studios and got a room. We had no clothes, no toothbrushes…nothing! It was great! We left the park (singing) and went to the Polynesian. We rode the monorail forever, kids singing the entire time (it has always been the favorite ride.) We get back in time to see the fireworks and they are screaming out the colors and Noah is proclaiming “This is so romantic!! Just so romantic… Isn’t it? I think this is the most romantic place you guys have ever seen?” (My old soul…Romantic?… Ok sweet boy.

In the morning, another coup de gras – something he has waited a very long time for… Noah got to fly!  More specific, he got to pilot a hot air balloon! He loves flying! We had tried several times, but sickness or weather got in the way. Not this time!!! Let me promise you that this lead to a lot more singing!!

Please pray for Noah. Thank you!