Been there

My children already know this. But my future grandchildren don't.

And with the current news of the day, it seems like a great time to write about it.

Vern and I met in Alaska, courtesy of the Exxon Valdez oil spill. Some may remember that about 21 years ago, the Exxon tanker Valdez ran aground in the Prince William Sound and dumped most of her load of oil. Exxon began clean up efforts, severely hampered by environmentalist oversight and the U.S. military was called in, just in case we needed to federalize the clean up. I was sent up to Alaska as a logistics planner and Vern was our Navy liaison officer. His ship was one of two Navy vessels providing berthing (sleeping space) to oil spill clean up workers. He was the only one who knew about Navy ships. To my knowledge, Exxon leased the ships.

There was a lot to be learned during the effort and while I was only actually on site for about 5 weeks.. and Vern was there for 6 or 7 weeks, we both learned to be pretty doubtful about the ability of the mainstream media's ability to accurately report a story.

We also realized that, in general, people don't learn well from history. The Coast Guard folks we worked with had lots of experience in oil spill cleanups. And they knew their history. Historically, oil spills have been one of those things that clean up themselves over time. During the two world wars, there were lots of spills and within a decade, there was usually no evidence of the spill remaining. This proved to be true of the Exxon Valdez spill as well.

Hopefully, it will be true of the explosion in the Gulf as well. Once the oil stops flowing.

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!

Amazing things

For a while now we have been trying to figure out how we could use cloth diapers for James. They wouldn't have worked well on chemo, we thought. Though maybe in hindsight they would have. But we were having the hardest time figuring out how to find one that would fit him.

(And, truth be told, I was a little apprehensive. Since I had had two less-than-impressive forays into the cloth diapering world 18 and 7 years ago.)

James now weighs a little over 40 pounds and there aren't a lot of diapers, by the chart, that looked like they would work. We did ask lots of questions, but it seemed that no one we were asking had dealt with special needs babies who often need diapers much longer than typical children. I really wished we could just try a diaper that was meant for a bigger baby.

Enter Twitter. Since Hannah tweets her giveaways, she's met a number of cloth diapering mamas and one of them very sweetly sent Hannah an extra large-sized FuzziBunz diaper she had! It came in the mail just yesterday! Hannah put it on James, who immediately sighed in relief. (Poor baby, he has been wearing size 6 paper diapers and they are just not big enough anymore.) Not only do these diapers fit, but there is room for James to grow in them. And, if we still need to get bigger, Fuzzi Bunz has an extra large diaper that was made with special needs children in mind!

We were so tickled that we began looking for more FuzziBunz and Hannah found this buy six, get one free deal at Mothering Grace. (Hurry, if you're interested, the deal ends today... but check out Mothering Grace as she hosts a weekly give away and other specials.) Turns out that these are the one-size diapers... and we need the perfect size diapers.

So, we set to searching again. And we found Fuzzi Bunz Seconds AND they have a deal going on for 10 diapers with liners for 2/3s the regular retail price! AND Fuzzi Bunz Store had extra liners 1/2 off in the clearance area. So we put in our orders last night and soon we should have our own little stash of nice cloth diapers that work (he never leaked yesterday in 6 hours!) and FIT! Hallelujah!

Once we had the diaper in hand (and on baby's bottom!), many of the things we had been reading about the new cloth diapers made so much more sense and we have learned a lot!

I'm so grateful to Hannah's Twitter friend for sharing with us!

Three whole years

With stomach flu and a few other distractions, I nearly missed a very important anniversary.

While I certainly wouldn't have asked for this kind of an anniversary, I am grateful to be where we are in our journey with childhood leukemia. Three years from diagnosis is really a HUGE milestone, and sadly, not everyone sees this anniversary. From this point on, James' statistical chance of relapse is as low as it will probably ever be... in a very good sense.

Of course, with all the side effects and other things that affected James during treatment, we still have a few hurdles to overcome. The biggest hurdle is getting everything in order to get his ostomy reversed. In the fall, we were hopeful that the surgery to repair James' ostomy would happen this winter. For a number of reasons, that was unrealistic on our part and probably not a good time to be in the hospital anyways! Now, we are hopeful, that, Lord willing and James' little body cooperates and works like it needs to, he will be ready for surgery sometime during the summer.

We are amazed that life keeps humming along here. James is doing well in so many ways--the rash he had on his face for the last half of chemo has cleared up (though the skin still looks tender). He is getting taller (though not gaining much weight, which is good to a point, but won't be good for too much longer). He is getting to do some more 'normal' boy things, like play in the dirt and be outside (that will also get more difficult as the weather warms and we struggle to keep his ostomy bags on... until he has his surgery).

We marvel again at God's incredible mercy to us and His great provision for James and for us.

Giveaway: List Planit membership

Have you heard of List Planit yet? There is a giveaway for a one-year membership at Simply Being Mommy. Follow this link to learn more and sign up!

So much to be thankful for

I took James to Atlanta to see the oncologist today. Katie and Carrie joined us and we had a good day.

When Dr. Keller came in the room, James walked over and shook his hand. Dr. Keller squatted down with his 'simply amazed' smile and just looked James over. Finally, he pronounced, "Wow. He is looking really good, isn't he?"

James' counts are really good. After being perpetually high through all but the first month of chemo, James' platelets are now a little below normal. His hemoglobin is hanging out around 12.5 and his new energy level shows it. His white blood counts are very good for James... just a little below normal for the rest of us, but good for James with Down syndrome. The rash on his face is so much better. The skin looks tender (and maybe a bit dry), but the nasty bump part of the rash appears to be gone. (PTL!) If I haven't already say so, James is supposed to be seen by the oncology team once a month until October (at which point we'll go every other month, weaning us all to the point of our last visit at five years from the end of treatment....all Lord willing, of course.)

I asked Dr. Keller what he thinks is in James' future from his perspective--not looking for promises, just wondering what he sees from his point of view. He said he is very optimistic about James' prognosis. He says the largest group of children that relapse do so during treatment. The next largest relapse group does so within the first three years--James will hit his own three-year mark in March of this year. Once you reach the three year mark, the relapse rate levels out and things look pretty good. Of course, these are only statistics and if you happen to fall on the unlikely end of the statistics, it's a 100% deal. So, for now, we are glad to know that statistically speaking, James is doing very well. But we are ever mindful that there are no promises and our comfort comes from knowing the Master Planner... not from the statistics.

Dr. Keller said that from a leukemia perspective, there is really no reason to delay repairing James' ostomy.

I was able to talk to James' surgeon today too. He was encouraged by our progress with flushes and said we could move to the next step--(WARNING: TMI alert, sensitive folks may want to skip to the next paragraph) we'll be taking his ostomy output and putting it into his mucous fistula--the top of his colon--so he can try to process it like we do. We'll start small to see how he tolerates it, but the ultimate goal is to put EVERYTHING that comes out of his ostomy through his colon to make sure it will work when we put it back together (Lord willing). There really is no test that can show us that James' colon his alive and healthy and ready to do the work it was designed to do. His body has endured nearly three years of chemo, His colon has been idle for 2.5 years. The only way to make sure it will work is to use it. I am just so thankful for a surgeon with the foresight to put the top of James' colon in a place that we could test it out. Apparently they don't all think to do that, but ours did.

We have seen a lot of improvement in James since we finished chemo. He is getting in to more and dancing more. His energy levels are much higher than they were during chemo. He is trying more sounds and saying more (though he still doesn't speak fully or clearly, he has expanded his repertoire of vowels. I love to hear him say, "Uh....Oh!" He is expanding his food horizons too and, while he still has his favorite stand-bys, he is trying and liking more different foods all the time. Over Christmas, Hannah took James and the little girls to some neighbors to borrow some movies. While the rest visited, James invited himself to climb their stairs and visit their big boys' bedrooms!

We continue to appreciate the prayers of so many and are grateful for your investment in our family. We still have lots to ask God for as we move along in James' healing. We need wisdom and resources to accomplish this next step in preparing James for his ostomy repair, and we need God's hand of blessing on James and our efforts to help him.

The wall, part 1

Since we moved into our house--just about 2 years and 2 months ago--we have had one big wall that is still studs. Our hope, when we built, was to cover the wall with some sort of stained wood and build bookshelves on most of it.

Thanks to a very generous Christmas gift, we finally started! Vern wanted to put insulation in the wall between the living room and bedroom to dampen the sound.

Pictures below show the first steps. (I'll put up more once we get them downloaded from the camera.) I really enjoyed watching and listening to Vern and Owen work together. My heart longs for the day when they can work together all the time!