feb12flySo let me tell you about our latest trip to St Jude. Nick and I have our trade offs, this photo is one of them. Daddy handles Nicky on the flights and Momma handles all the medical work and sedations and appointments. Even though Nicky is cuddled up in his Daddies arms, that's only a portion of the flight. Nicks got witty humor and it was pretty comical after the flight in Memphis he said," Anyone behind us would think I was wrestling an alligator!" No doubt when Nicky gets fussy and has to be restained, it's quite a task that lasts 30-45 minutes at times. Especially because of his ear infection.

So we arrived and settled into Grizzle House. 4006Into the same room we had in August. Upon arriving after lack of sleep and stress over not being sure we would make it to Memphis, I got sick .... it was a bummer because I really couldn't be around anyone and so many families were there that we know. I couldn't chance getting any of the kids sick because many of them are in treatment, whether it is chemo or radiation, their counts are low so I didn't get to spend much time with anyone.

feb12med

Our first stop was med room, we got there at 6:45pm and Nick walked us over to the hospital because I just didn't want to walk alone. Nicky was a handful, port access and height and weight are a challenge and the labs and vitals too. In and out .... we expected his counts to be low since he has been sick and they were, his ANC was 1200. That just means we have to still be so careful with him being around germs and bacteria.

I did get to see Ryan D. and her Momma - her scan Monday was NED. We saw Tyler B. and his Momma and his scan Wed was NED, We saw Ashlan B. and he family and she remains STABLE, which is wonderful news. We saw Avery C. and her Daddy and Brody S. and his Momma, I saw Peyton A. dancing in his Jammies at Kay Cafe, they are there for Treatment. We saw Arianna R. and her family on our plane down they had a connection flight. We did not get to see Bree H. I was so worried that she may get sick from us and she has surgery on Monday so please pray.We also got to meet serveral new families.

feb12mri2What you didn't know about the MRI ... well we had a clearance visit and when we got there for results, there were none to have because the systems to view them were down. it was stressful, we actually went back and packed and went back to the hospital to wait and they told us not to and to go and that Dr. Wright would call us with the results. I hate that ... lol ... I did not want to leave and head to an airport without knowing. Then Nick put his phone in my hand .... there was a message from Dr. Wright while we walked out of the hospital the phone did not ring and she left a message saying all looks good and we could come back if he had 5 minutes if we wanted to see ... I thought he was joking .... It made my day and I was feeling better, I mean hearing the MRI is NED is a breath of AMAZING energy .... Then the unexpected.... we got to the airport and had a 5 hour delay due to equipment in the plane, a panel not staying in place. We didn't get home until 3am and we were so tired. Nicky slept during our normal flight time and was up the entire way back. AGAIN Daddy saved the day handling him. With lack of sleep we both got sicker and Nicky seems to be doing better.  We got an email yesterday from Dr. Wright saying Nickys LP (lumbar puncture) was negative for cancer cells. Just another BEAUTIFUL relief.

Every trip to St Jude is humblimg, Nick and I feel truly blessed when we see so many children facing so many difficulties and challenges. It reminds us of where we were in the beginning of this and how far we have come. This journey isn't an easy one and it will always be our new normal. I'm taking a few steps back from all this to enjoy my family right now. I will update on Bree for you all, but after that ... we are just going to enjoy this blessing of health, love and family. We are even heading to Disney for a week. We cant wait to see how Nicky reacts this time since he's the same age Christian was his first time there. I want to thank you all for praying so hard for our NickyBear. Your prayers carry us through the storms of tests that hold much weight. God's Hands are truly ALL OVER IT! It's just a break from all of this, while I advocate .... we just need some down time to be a family right now and enjoy all of God's blessings.

Below I will leave you with one last photo, it was at the airport when we left, notice Nickys coverse Shoes ... thank you Auntie Nicole. They are made by a company name Peaches Neet Feet and they create these one of a kind shoes for children fighting cancer. You can donate to the company to provide more shoes or order them for a child you might know, but they are so special and personal.This is their site: http://www.peachsneetfeet.blogspot.com/  or on facebook to see all the shoes ...http://www.facebook.com/PeachsNeetFeet She is so inpiring .... may God Bless this company....

feb12jude

Support

Ependymoma - Ependyparents

Go to Facebook Ependyparents and Join