James is learning to read!

We figured out YouTube and signed up for an account, so we could share this sweet video of James and Momma reading James' ABC book from Love and Learning.

Incredible People

The people you meet when your child has cancer are really a rare and incredible breed. The variety is great. The people are nothing short of wonderful.

Three years ago, when we moved our cancer journey from Minnesota to Georgia, we met Bill Ruck and his son Pierce. Bill and Pierce introduced us to Love and Learning, a reading program designed for children with Down syndrome. But I digress.

We followed Pierce through his Care Page, diligently kept by his mom, Elena. We were devastated when Pierce relapsed about a year ago. We rejoiced when he made it through a Bone Marrow Transplant last August and we felt like the world had been pulled out from underneath us when Pierce relapsed again shortly after his BMT. Pierce left this world just before Christmas last year. We had hoped to be at his service the day after Christmas, but we all woke sick with res and knew we didn't need to go sharing.

Since then, Bill has been rallying his energies to reach out to other kids with cancer and he's started a new organization. It is called 'From Thin Air' since Bill is so good with 'magic' tricks (the sleight of hand kind) and he is working to make memorable evenings for children will cancer to give them a break from the grind of treatment.

Check out Bill's website: www.fromthinair.org and follow from thin air on Facebook. You can probably friend Bill Ruck too.

If you have connections that might help Bill make special memories (like limos and restaurants and tickets to various events) or you know of a child in the Atlanta with health issues that could use a break from the grind of treatment, contact Bill and let him know.

He's the kind of guy that really wants to do all he can to help!

What country children do when they don't have a swingset

Earlier this year, Vern got a nice hoist so we can pull up our own hogs and cows when we process them. We had, at Christmas time, done our first hog all ourselves and found it nearly impossible to lift it up to scrape and gut. So now we are ready for the next time.

Vern and Owen like to think ahead (or so they say :*), I think they just like to play with their new toys!) so they hung the hoist in the carport to practice with.

And our country children put the hoist to work, giving carnival-like rides to anyone in the family that wanted one!

What I know about James

There is LOTS to know about my little Jameser. And I admit, I have a lot to learn.

Monday, we went to Atlanta for James' monthly follow up with his oncologist. (As much as I love the folks in the clinic, I am looking forward to moving to every other month follow ups come October!). James looks great and so do his blood counts. We are grateful all is calm on that front!

That same day, we also met with Dr. Tenjarla, who follows James as a GI specialist. She agreed James looks great and his progress since we met three years ago has been nothing short of impressive. But... she doesn't want us to take the g-tube out yet.

She explained that it is really the surgeon who wants the g-tube to remain in place, but she made it plain that she supports their call and gave me more information to help me better prepare for James' surgery.

Evidently, many children who have this surgery (called reanastomosis) often end up in ICU for a few days. They may end up needing TPN and often need some sort of formula as nutrition and for getting things moving again in the GI following surgery.

I wondered how this would work practically, but, evidently, I hadn't yet asked all the right questions. Or hadn't asked the right people.

Having a g-tube for James will certainly make this whole process easier. We could use an NG tube, but that would, more than likely, make it harder for James to start eating by mouth on his own again. The typical children have a hard time increasing their food by mouth when they have another tube in the back of their throat. How much more would this bother James with his oral sensitivities? Probably a lot... and it would potentially be a big set back for him. We have seen this happen over and over again on the cancer floor, and I really don't want to put James through that.

That said, I'm not at all excited about TPN or formula either. But having this information, and a g-tube, will open the door for us to create our own natural food formulas at home to bring to the hospital to use for James. This will be a good thing, and as long as we can work out the details, I think keeping the g-tube for James will be beneficial all the way around.

I don't know how many of you have read a formula can recently, but all the carbohydrates in the formula James used for a time when he was on chemotherapy come from sugar and dextrose. ALL the carbohydrates! And the proteins come from overprocessed milk or soy. One thing we noticed is that as long as James was getting any formula at all, he had no interest in eating real food, but plenty of interest in 'junk'. Once we had James at home and switched him to homemade real food formula, he got interested in real food pretty quickly and it wasn't long until we didn't need to use the g-tube any more (we haven't fed him with the g-tube since last summer and we haven't used it for anything at all, including fluids, since November).

So, this is where things are now. I have a call into the surgeon to determine exactly what and how much has to happen before we can schedule James' surgery. And I will be calling a nutritionist we have worked with in the past for some help with numbers we need to consider when developing a 'formula' for James.

I am so glad and grateful to know this information now, so we can plan. I would feel so helpless to not get this when we were already in the hospital and I have nothing to work with. Thanks for your prayers. Please keep praying that the Lord would make our way plain!

Brothers

James had just gotten a bath and Owen offered to get him dressed. Owen surprised us by dressing James to look like a miniature version of himself!

Brothers who match!

Smiling for the camera!

Happy Resurrection Day!

In my mind, I have long thought that the events of Easter, or the Resurrection, warrant a much bigger and more significant celebration than Christmas. The Resurrection is central to the whole purpose and significance of Christianity, after all.

In reality, Resurrection Sunday always falls around week 6 or 7 of a 9-week run of five birthdays in our family. And I never get it together to do the things I would really like to do.

One thing we try to do every year is Resurrection Cookies. I didn't have much hope that we would get to do them this year, but last night at about 11:10, we were putting our Resurrection Cookies into the falling oven. When everyone is up, we'll get them out.

Here are the instructions:

Resurrection Cookies


1 cup whole pecans
1 teaspoon vinegar
3 egg whites
a pinch salt
1 cup sugar
a zipper baggy
1 wooden spoon
scotch tape
Bible

Instructions:

These are to be made the evening before Easter. Preheat oven to 300F. (this is very important --- don't wait until you are half done with the recipe).
Place pecans in zipper baggy and let children beat them with the wooden spoon to break into small pieces. Explain that after Jesus was arrested. He was beaten by the Roman soldiers. Read: John 19:1-3

Let each child smell the vinegar. Put 1 teaspoon vinegar into mixing bowl. Explain that when Jesus was thirsty on the cross He was given vinegar
to drink. Read: John 19:28-30

Add egg whites to vinegar. Eggs represent life. Explain that Jesus gave His life to give us life. Read: John 10:10&11

Sprinkle a little salt into each child's hand. Let them taste it and brush the rest into the bowl. Explain that this represents the salty tears shed by Jesus' followers, and the bitterness of our own sin. Read: Luke 23:27

So far the ingredients are not very appetizing. Add 1 cup sugar. Explain that the sweetest part of the story is that Jesus died because He loves us. He wants us to know and belong to Him. Read: Psalm 34:8 and John 3:16

Beat with a mixer on high speed for 12 to 15 minutes until stiff peaks are formed. Explain that the color white represents the purity in God's eyes of those whose sins have been cleansed by Jesus. Read: Isaiah 1:18 and John 3:1-3

Fold in broken nuts. Drop by teaspoon onto waxed paper covered cookie sheet. Explain that each mound represents the rocky tomb where Jesus' body was laid. Read: Matthew 27:57-60

Put the cookie sheet in the oven, close the door and turn the oven OFF.

Give each child a piece of tape and seal the oven door. Explain that Jesus' tomb was sealed. Read: Matthew 27:65-66

GO TO BED!

Explain that they may feel sad to leave the cookies in the oven overnight. Jesus' followers were in despair when the tomb was sealed. Read: John 16:20&22

On Resurrection Sunday (Easter) morning, open the oven and give everyone a cookie. Notice the cracked surface and take a bite. The cookies are hollow! On the first Easter Jesus' followers were amazed to find the tomb open and empty. Read: Matthew 28:1-9

You could even do them tonight if you like... or you can save the recipe for next year. In the meantime, everyone here wishes you a meaningful Resurrection Sunday!