Much Ado About Nothing

I've taken liberties again with the title of this entry.  I'm afraid my love of reading and teaching Shakespeare may have influenced my editing.  Michael's response to reading the title was, "Huh?"  I have my work cut out with him.

Michael's routine blood work this last Tuesday showed that he has a virus.  (I don't dare try to type the virus' name.  We've only heard it in conversation, and I'm sure to slaughter the spelling.)  We spent the majority of Wednesday on the phone discussing Michael's condition, the options for treatment, and an available study drug with all its benefits and side effects.  We quickly tried to prepare for anything from an immediate hospital stay to weeks of medication and monitoring.

Michael was having none of the symptoms of the virus which could range from signs of a cough/cold to more serious intestinal issues.  Since he was feeling so well, the doctors decided to delay treatment and bring him back for more indepth blood work.  With his weakened immune system, they needed to know how much virus was actually present and how quickly it was growing in his unprotected body.  Over the last days, the results of those tests have come back to show that he only has a small amount of the virus present and that it is not growing.  Both were good signs.

Given such positive news, both the hematology/oncology doctors and the infectious disease doctors agreed to just watch him closely for any symptoms over the next weeks and repeat the blood work often.  So, after a flurry of activity, we are thankful to be able to just sit quietly at home together to welcome the new year.

Home for the Holidays

It has been a simple, quiet holiday season here at the Vaughn house.  Many traditions had to change in order to obey the rules of the post-transplant isolation.  Instead of the annual hunt for the perfect tree, we had to put up our first artificial tree.  Since Michael wasn't allowed out, we stayed close to home but did sneak out one evening to enjoy a light display nearby, staying in the comfort of the car to include him.  Family gatherings took place via Skype.  A few people stopped by briefly to deliver and collect Christmas packages, but we could not be part of any traditional celebrations or parties.  Of course, with no events to host or attend, we had to eat all of our own Christmas goodies; we've been suffering horribly.

Michael's clinic visits have been going well.  The doctors are pleased with his recovery.  The nausea and stomach pain are fading, and his appetite is improving.  Over the last two weeks, he gained one pound.  It's a start!  He continues with physical and occupational therapy regularly as well.  (If anyone has ideas for motivating a pre-teen to exercise, we'd love to hear them.)

Right before Christmas, a lovely article was in the local newpaper about Michael and the school's "100 Gifts" project.  It was a wonderful way to let many surrounding communities know about Michael's story and the tremendous heart of our school.  If you have kept up with his news on the blog, the article won't really share anything new, but the link is included should you like to read it.

http://www.thetelegraph.com/articles/counts-63732-family-hill.html

One of the truly amazing things about a journey like childhood cancer is how it changes your priorities and perspective.  In comparison to all other years, we find ourselves being thankful for such different things as we look over the past year and praying for far more specific and simple things for the year to come.  So, we won't just wish you a Happy New Year, we will wish you one filled with the security of a living, growing relationship with Christ; the beauty of a warm, loving family; and the spirit of gratefulness for each day, each blessing, and each trial that God gives you.
                                                                                                                                                                                                             

"Hold the pickle. Hold the lettuce . . ."

Michael is too young to remember the old advertisement for getting dinner made your way at Burger King, but he is having to "special order" quite a bit of his food these days.  The bone marrow transplant diet is rather restrictive in order to protect him from the possiblity of any food borne illness.  He wanted to share some of the general rules that he must follow for at least the first 100 days after transplant.

1. In general:  Food should be prepared carefully in a clean environment.  Hot foods must be served hot; cold foods must be served cold.  Foods must be put away properly and immediately.  Leftovers are only allowed in their original state (hot or cold) for only 48 hours after originally served.  No food may be eaten after its expiration date.
2. Fruits and vegetables:  May not be fresh or raw.  Must be frozen or cooked.  Must choose from those with a thick skin (orange, banana, canteloupe).  Juices must be pastuerized.  May not eat salads at all.
3. Dairy products:  Must choose only mild, packaged cheeses; no aged or specialty cheeses.  May not eat any cheese product from a deli.  May not eat soft serve ice cream or frozen yogurts.  May not eat cream-filled products.  Milk must be pasteurized.
4. Breads and grains:  May not eat any breads from a self-service bin (including restaurants).
5. Meats:  Must be well-done.  May not eat any wild game (His favorite snack of deer sausage is out!).  May not eat any meat product from a deli.  May not eat most seafood.  May not eat jerkys.  May not eat fresh nuts or nuts still in shell.
6. Beverages:  May not use ice from an ice maker.  May not drink products from a fountain machine (water or soda).  May not leave beverages out for more than an hour.
7. Restaurants:  Must request food be made at point of ordering.  May not include condiments.  Absolutely no buffets.  (Since he cannot go out into public right now or trust a drive-through order, most restaurants are basically off limits.)

Michael isn't finding it too difficult to live within the guidelines, but it does require us to think about the food choices that we make.  He misses salads, tacos, fresh fruits, and his deer sausage/jerky; he is also frequently disappointed to find out that a leftover is "too old."  Can you guess what's on the menu for February 4th?

Struggles

Michael continues to struggle the past week or so.  The constant battle between stomach and brain is tough.  He needs to eat.  Lots of food.  Lots of high-calorie food.   His stomach, now smaller and irritated by months of chemotherapy, just does not want to cooperate.  Although I can assure you that Michael is not pregnant, his description of how he constantly feels sounds just like morning sickness to me.  (I am pretty sure that after this experience, he would be the best daddy-to-be any expectant wife could ever hope for!)  He seems to be feeling a bit better in the last day or two, so we pray that this will soon be over.

We are having meals with lots of breads, white sauces made with heavy cream, mashed potatoes made with sour cream and cream cheese, double cheese on everything, peanut butter and cracker snacks, and chocolate shake or ice cream desserts.  The rest of us may have to look into joining a gym soon, but Michael is supposed to consume all the calories he can.  Suffering has never tasted so good.

Little Blessings

A little over two weeks have passed since Michael updated his list of gifts from his school family.  This project still brings a bit of encouragement to each day.  Some days, he finds that the gift is just what he needs to remind him that he should count his blessings.

One particularly long day for Michael and busy day for the rest of the family, we all forgot about his opening a gift.  As he went to bed, he said that he was just too tired to even open that day's gift.  A few minutes later I found him frustrated that his little bedroom flashlight seemed to have finally quit working.  I jokingly asked him why he didn't just open up a gift; maybe he'd find a flashlight.  I ran and selected a small, lumpy package and insisted that he open it.  We weren't sure whether to laugh or cry when he opened--you guessed it--a little flashlight (with batteries included).  God truly provides even the smallest desires of our hearts, sometimes before we even ask Him for them.

In addition to the flashlight, Michael has received:

• "Minute to Win It" and "Scrabble Slam!" card games
• Reeses', York peppermint patties, chocolate bar, 3 Musketeers, Oreos
• Miniature Cardinals bat
• Silly string
• Pringles, Cracker Jack, gum
• Creature craft kits
• Golfing and peg-jumping (like on Cracker Barrel tables?) hand-held games
• Wooden, 3-D puzzles

Even though this post lists the small blessings of Michael's days, we wish for each of you the simple, special joy of your own "little flashlight."

The Wait is Finally Over!

We got the report on Michael's biopsy today!  The news was all positive:  Michael's cells are now 100% Timothy's, so the engraftment has gone as planned.  There are no cancer cells present at this point, so the final rounds of chemo and radiation accomplished their purpose.  Michael is making all three kinds of blood cells on his own now without any aid of transfusion or medication, so his recovery is going quite well.

What an encouraging day (Day 46)!  After hearing the biopsy report, we continued with his regular weekly clinic visit.  Michael looked good enough to them that they are going to allow him to wait two weeks until his next appointment.  Another bit of great news!

The only problem that Michael has been facing lately is a sudden, nagging stomach pain and nausea.  He finds that even though he wants to eat, he is so overcome with the pain/nausea at mealtimes that he can hardly eat enough to get his required medications down.  He's been discouraged, concerned, and quite weak and tired as a result of hardly eating for most of a week.  He did lose some weight.  The doctors today seemed unsurprised by this problem and gave me some ideas to trick his brain and stomach into accepting more food and to help him gain his weight back.  He's been doing so well that we were a bit surprised to finally run into a hurdle in his recovery; we'll continue to count our many blessings, though, and happily tackle this problem.

We spent the rest of the day in physical and occupational therapy.  While Michael has no specific problems, they'd like to see him regularly to help him regain the strength that he has obviously lost over the last months.

Thanks to all of you who have asked so faithfully about the results and patiently waited with us.  We appreciate your support.  He will have another biopsy after Day 100, and we will pray that the results will be the same.  One step at a time . . .

Waiting is "Yucky"

In the interest of full disclosure, I must admit that this post is entirely from a mother's viewpoint.  A dear friend told me today, "Waiting is yucky."  I couldn't agree more.  We are still waiting to hear the results of Michael's biopsy.  So much of Michael's and our future depends on whether any cancer cells are found or not. 

Every time the phone rings, my heart leaps into my throat.  Every time I see it's not the hospital calling, I feel a mixture of disappointment and a strange relief.  I want to know the results . . . we all need to know the results . . . BUT the fact that the results may not be what we are praying for makes me anxious about finally getting that phone call.

I am learning quite a bit through this whole journey.  I have known (for what seems like my whole life) that God has ordered each of our steps and that His plans are absolutely perfect, but now I am learning to truly believe and rest in that truth.  I have known that every child is a gift from God to raise for His glory and service, but now I am learning what it means to simply be a faithful steward of that gift.  I have known that God's timing is always best, but now I am learning what true patience and contentment should look like.  This mom has much to learn, and I'm afraid that I'm a terribly slow learner!  I'm certainly glad that God is more patient with me than I have been this week.

Christmas Comes Early

Many have asked whether Michael is enjoying the gifts from his school friends.  He is!  It certainly feels like Christmas already.  Each day the gift-opening becomes an event; brothers and sisters help him choose a package and then watch excitedly as he opens.  He has been very careful to include all of us in using, or playing, or eating each gift.  What a great encouragement this has been.

• Sorry! and Would You Rather? card games
• Wooden, antique car model
• Bouncy ball making kit
• Battleship game
• Cardinals (World Series Champions!!) stocking cap
• Case of Mountain Dew
• Skittles
• Gum
• Mac & cheese bowls
• Electronic Rubix cube
• Cardinals Snuggie
• Slinky
• Snowman craft kit
• Gigantic Koosh ball

We'll include a post every now and then to keep you up to date on Michael's gifts.  Since many of the gifts are anonymous, Michael wanted to have some way to let all those involved know when their gifts have been opened.  This post will have to serve as a HUGE thank you to everyone so far!