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!

Biopsy Day

Michael has reached Day 33.  One month after the transplant a bone marrow biopsy is scheduled to determine whether the donor marrow has engrafted and if any cancer cells remain.  Today was Michael's bone marrow biopsy.  Timothy also needed to have some routine blood work done to show if he has recovered well from such a large donation of marrow.

Even though they are becoming fairly routine, bone marrow biopsies are still somewhat nerve-wracking.  It's never easy to watch your children be wheeled away into any surgery, wait patiently for the call that the procedure is finished, and then sit helplessly by while they struggle to awaken and face any residual pain. 

Today was made even more "fun" when we were involved in a car accident on the way to the hospital.  As we were driving in the heart of St. Louis, a lady rear-ended us.  Our damage was minor, but it certainly made us quite late and complicated the day's schedule.  Michael's immediate concern was that his blood pressure would be a problem.  We know that God plans each detail of every day, and He kept us safe and allowed us to keep all the appointments and be bumped back in the surgery schedule.

Michael did well with the biopsy and is only experiencing some back pain.  He refused the wheelchair and walked out with us, bounding up the steps instead of taking the elevator.  He is quite a warrior.

Now the waiting begins.  We'll get news within a couple of days about any cancer cells present based on an initial assessment.  In about a week, a more in depth screening for cancer will be complete.  The results of the engraftment will be available in about two weeks.  We are certainly praying for NO cancer cells and a successful engraftment.  Thank you for praying with us.

A Quiet Thanksgiving

There's not been much to report for the last days.  Michael has been doing just fine--eating well, resting as much as possible, continuing to catch up on school work, building back up his strength.  Medically speaking, there have been a few tiny bumps in the road with adjusting and readjusting his medication, a contaminated line that's used for blood work, and many visits from the home health care nurses. 

The Thanksgiving holiday passed quietly around here.  Those of you that know us well realize that "quiet" is a competely relative term in our house!  We had so much to be thankful for this year and a renewed sense of what we should have been and will now continue to be thankful for each day.  When we were sharing our blessings over Thanksgiving dinner, Michael's turn was short and sweet.  He said, "I am thankful for Timothy."  We trust that you found yourselves just as blessed this Thanksgiving.

Simply Overwhelmed

Michael has always been such a laid-back, even-tempered child that few things ever really seem to generate much emotion from him.  Birthdays and Christmas mornings can be somewhat anticlimactic; he rarely does more than smile and offer a polite "thank you very much" for the most exciting gifts.  On the other hand, he quietly takes disappointments and frustrations in stride, which has been a blessing during the last few months.

Today was one of those few days that broke through his reserve. 

Michael's teachers, classmates, and friends at school recently began a secret project to encourage him during his 100 days of isolation.  They knew that spending all that time quietly at home, only leaving for essential outings and being unable to have many visitors, would be long and difficult.  They collected over 100 small gifts for him, wrapped them, and presented them to us today with the instruction that he open one or two gifts each day to help brighten his spirits.  High school boys made several trips, filling our car with bags and packages.

Michael was absolutely stunned.  He couldn't believe the thoughtfulness, generosity, and kindness of all the great people at our school.  He kept using words like "ecstatic" and "amazed."  We're not quite sure just how it will ever be possible to let everyone involved know just how much this has already and will continue to encourage him.  Thank you just isn't enough . . .

His first day:  Scrabble Flash (It was lots of fun!) and a balloon animal kit (The other kids are thrilled with the swords and dogs he's been making for them.)

A Day in the Life . . .

In keeping with sharing a glimpse into Michael's life at the hospital, we'll share these pictures of the activities that comprised much of his (and our) days.

Dreading one of his medications



Watching the Cards win the World Series

Doing homework (or at least staring at the book) 



Enjoying the view from his window over Forest Park
Morning - above.  Evening - below.



Working in Physical Therapy



Making a Cardinals stamp in Art Therapy

Playing "Prove It!" in Occupational Therapy

We are only missing pictures of him sleeping, being examined, and harrassing his nurses.  The days went by remarkably quickly, and he never found himself bored.  It was an interesting month.

A Bone Marrow Transplant in Pictures

We've told you quite a few of the facts about Michael's recent bone marrow transplant.  It's nearly impossible, though, to explain what this experience was like for Michael and our family.  Maybe the old saying that "a picture is worth a thousand words" will help us.  We hope these will give you a glimpse into our experiences.



Timothy arrived excited to do his part.

Waiting for surgery . . . . Look at me, Mrs. Brenner!



Getting ready to start the actual transplant.  He admitted to being a bit nervous
(probably about the sparkles he thought he spied in Timothy's bone marrow).



Timothy wanted so badly to be with Michael during the transplant.
He just wasn't quite feeling himself yet.



They watched the very end of the infusion together.
If you look carefully, you can see the last of the marrow in his line.



The boys played a game together after the transplant.



It was wonderful to have all the children together for a little while.
It was the only time they were permitted to visit Michael.



Finally, his FOOD!



He removed (with help) his own IV!



Michael surprised Timothy with a "thank you" gift card.



Michael's recovery was quite quick. 
He awoke one day to this sign made by his artistic nurse.

Once he got word that he was to be discharged, it didn't take long for us to pack him up.



On the way home from a major treatment, the cancer patients celebrate by ringing the bell!
Michael is carrying the pump for his continuing IV meds (NOT a purse).

Our Top Ten Lists

The Top Ten Things We WON'T Miss at the Hospital:

1. The smell.  There's just something about the smell of a hospital.
2. The 18" wide parent bed.  How in the world does someone get comfortable on that?
3. Parking garages and trying to remember where you parked this time.  If it weren't for that panic button on our key fob, I fear I'd still be walking in circles.
4. Taking a shower without a shower curtain.  Did you know how much bacteria lives and breeds on your shower curtain?
5. The sound of isolation gowns.  Hearing one being put on outside the door is a nice warning that someone will soon enter, but after all the noisy nights, we'd prefer stealth.
6. The beeping!  The beeps in your own room, in your neighbor's room, at the nurses' station.  The beep that tells you that your medication is almost complete, that it is complete, that it is interrupted by "air in the lines," that your heart monitor notes erratic behavior, that your breathing is too shallow, . . . etc.
7. Courtesy of #6, the intercoms:  "Nurse, to room 18 for a beep."
8. The obligatory IV pole weighed down with his eight pumps and enough connecting tubing to wrap around the world 2 and 1/2 times.
9. The elevators.  Waiting for elevators.  Crowded, smelly elevators.  Lurching elevators.  Elevators that are going to stop . . . at . . . every . . . floor courtesy of the curious child and inattentive parent who just made a sheepish getaway.
10. The 4 a.m. vitals.  Enough said?

The Top Ten Things We WILL Miss at the Hospital:

1. Having a great flat-screen TV with dozens of channels.  (Yes, it is with equal measures of shame and fiscal responsibility that I admit we are one of the few remaining households with limited, antenna TV.)
2. Having unlimited access to movies and games.
3. Receiving kind visits and gifts from various organizations that exist to encourage children with cancer.
4. Learning new games with his Child Life Specialist.
5. Beating his Occupational Therapist at Chicken Foot.
6. Proving to his Physical Therapist that he "can do five more minutes" each day.
7. Having permission to eat ice cream and drink soda any time he wants.
8. Getting to stay up late and sleep in just as late.
9. Having a bathroom all to himself.  (Seven people sharing one small bathroom at home sure made mom glad for the private bathroom!)
10. The nurses.  There are some truly amazing people who took care of him; we will miss seeing them on a daily basis.

"Wow, you look awesome, Michael!"

This was a direct quote from one of Michael's doctors today at his first post-transplant clinic appointment.  Medically speaking, Michael is doing better than they'd expected.  He has suffered no real effects of graft vs. host disease at all.  He has eaten well since he's been home and gained two pounds.  He is exercising and growing stronger every day.

We have begun a new chapter in Michael's care.  A standard part of bone marrow transplant recovery involves constant IV medication for the next months.  Now we are becoming accustomed to flushing his broviac lines, preparing medications, and changing IV bags and lines.  There is never a dull moment.

The next big hurdle is a bone marrow biopsy.  The date has been set for November 29th.  Though Michael is recovering and responding well to the transplant, only a biopsy will show whether the transplant has actually worked.  We are certainly praying that the radiation and chemotherapy rid him of all remaining cancerous cells and that Timothy's bone marrow that is now growing with Michael's own will be cancer-free.

The journey continues . . .

Shortest Post in History

Michael came home today!

(Promised you it would be short.  More information to come later.  I want to get back to enjoying our first evening together in almost four weeks.)

Boring is GOOD!

These days are rather unremarkable. Michael is slowly crossing all the hurdles necessary to be able to come home.

ANC of 500 for three days or 1500 for two days (depending on which doctor is doing the talking!)--DONE.

Needing no pain medication--DONE.

Having no fevers or evidence of infections--DONE.

Eating and drinking adequate amounts--DONE.

Exhibiting appropriate physical strength--DONE.

Showing little effect of Graft vs. Host Disease--DONE.

They have recognized that Michael won't be spending many more days here. We spent an hour or so on Friday learning all about the details of life once Michael goes home. We are 16 days into the important 100 post-transplant days. Until February 4th, our habits, activities, and diet will need to change drastically. I had to pass a test to deem us fit to care for Michael once he gets home. It was simple enough, but it reinforced the seriousness of the situation for me.

Each day passes rather quickly and routinely now. When the nurses ask if Michael needs anything, he frequently changes his answer from "No, thanks," to "Yes, my discharge papers." We are all waiting patiently for that day.

Armed and Dangerous

Michael has found that one of the best ways to make the time go faster in the hospital is to have some fun with his nurses. He's too laid back and shy to try to pull off any major stunts, but he does enjoy playing little pranks.

(Disclaimer: Let the record show that I am simply recording the following events. In no way did I have any part or take any pride in the planning or executing of these heinous deeds.)

One of the gifts that the hospital has given to him is a Nerf gun. Probably every American family with boys has several, and Nerf gun-fun translates easily from home to hospital room. One particular nurse professed a great fear of being shot by Michael, so he gave his word as a "gentleman" to never shoot her. As soon as she left, he concocted a plan with his father. When the nurse returned, Michael sat by innocently while Mark shot her. As if that weren't enough, Michael called her back later and just threw a handful of darts at her. I'm pretty sure that I need to bake her some brownies now.

Michael keeps an arsenal of his toys at close reach. He has collected silly string, several syringes full of saline, and, of course, his loaded gun. My warning to those of you inclined to visit Michael: Do so at your own risk!

Ups and Downs

This is one of the few times when both "up" and "down" can be good news. The last couple of days have brought great reports on Michael's progress. One doctor said that Michael looks like a patient who is a couple weeks, not just one week, out of transplant.

The engraftment of Timothy's bone marrow is taking place. Michael is slowly showing that he's making new blood cells. (Time out for a science lesson: The ANC is the number that we have learned to live by over the last months. The Absolute Neutrophil Count calculates the number of neutrophils, the white blood cells that fight infection, that are present in the blood. The healthy person usually maintains an ANC of 1,500-2,000, and any number below 500 is considered to be dangerous due to inability to withstand exposure to any infection.) Michael's ANC is up from O to just over 100. It should steadily climb from here. An ANC of 500 for three days in a row is a requirement to be able to leave the hospital.

Michael's muscositis is all but gone. They have gradually turned down his pain medication and plan to completely eliminate it by mid-week. Requiring no pain medication is another requirement to be able to leave the hospital.

Michael's temperature is staying down. For him, a fever is the immediate indicator of some possible form of infection and is treated seriously. He has had only one fever so far which responded immediately to antibiotics. A stable temperature, no infections, and requiring no antibiotics is yet another requirement to be able to leave the hospital.

Michael's appetite is slooooowly returning. He continues to eat small amounts of food periodically. Since the slice of pizza, he has eaten some ice cream, some chicken noodle soup, and (insert long motherly sigh) quite a bit of candy. The nurses delivered a large bag of Halloween candy to his room. The harder candies that can just dissolve in his mouth have been especially appealing. He is still being fed intravenously, though. When he's able to eat and drink sufficiently, they'll end the IV nutrition and he'll meet yet another requirement to be able to leave the hospital.

Michael's physical strength remains stable. Daily physical therapy sessions show that he has the strength required to leave the hospital, but his heart races with almost any physical exertion. Simply sitting up or standing puts a strain on his heart. When all of his medications are lowered, they'll have a better idea of what is causing this issue.

The final factor is Graft vs. Host Disease. The next few days will show if Michael's body is going to react in any way to Timothy's bone marrow. We are praying that the effects will be minimal.

It's exciting to watch things begin to move in the right direction--up or down. Every day, sometimes every couple of hours, brings some improvement. We are encouraged and so thankful for all your continued prayers.

It's Not Delivery . . .

It's not really DiGiorno either, but it is pizza! Michael's first official meal since entering the hospital two and a half weeks ago is PIZZA.

For most of these days, the mucositis has made any activity in his mouth and swallowing incredibly painful. We've all been pressing him to eat or drink something . . . popsicle, pudding, ice cream, yogurt, applesauce . . . anything. To this point, he has refused. They began giving him IV nutrition when his body weight decreased by 10%. (I certainly don't recommend the "Bone Marrow Transplant Diet," but it works!) We've just been waiting for him to indicate that he was ready to try eating again. When I left yesterday, he quietly asked if I would please bring a pizza for him today. All I could think was that beneath all the tubes and pumps and meds still lies a crazy, junior-high aged boy.

So today I baked and wrapped his favorite frozen pizza. I proudly carried the still somewhat warm pizza through the parking garage, past the information desk, up the elevator, and down the halls to Michael's room. The puzzled glances and clever comments didn't matter. I'm wearing my pizza delivery girl badge with honor!

Numbering our Days

It's Day 4. The transplant team has taught us to label each day by number. The days before the transplant were -5, -4, -3, etc. It was much like a rocket launch. Just without the rocket. Or the launch. Or the national news coverage. Transplant day was Day 0, and now we begin the slow march to Day 100.

Most days will just hold quiet struggles and small victories, but some days are important landmarks. The transplanted marrow is expected to engraft by Day 7 or 8. At that point, Michael's blood counts are supposed to start rising, and they'll begin watching for any signs of graft vs. host disease or other complications. Day 30 will quite possibly be the most important of this journey so far; Michael will have another bone marrow biopsy to determine his remission status after transplant. Pending good results, he will continue in basic isolation until Day 100 when a reevaluation will decide what "normal" activities he may be able to resume.

We are not sure at what point, Michael will be able to return home. He seems to be responding well recovering from the side effects of chemo and radiation. He is maintaining reasonable strength. He has had one fever, but it was quickly eliminated with antibiotics. With the mucositis pain, though, he is not eating or drinking. All of these things and the coming results of engraftment factor into the decision to allow him to go home.

Michael is still suffering from mucositis, the ulcerated sores in the mouth and throat, but his pain medications are helping. He has been sleeping quite a bit with periodic interruptions for taking medications or a session for physical therapy. The staff makes every effort keep his stay pleasant. His nurse today dressed up for Halloween as a Cardinal baseball player in Michael's honor.

Four days down, ninety-six to go!

Hanging Up the Cape

Our superhero went back to school today. It was time to return to reality. He has thoroughly enjoyed soaking up the wonderful attention that came with his new-found notoriety.

After the transplant on Thursday, Timothy bounced back quickly on Friday. The nausea was gone. He had very little pain at all. He wanted to experience everything. He ordered all of his favorite meals by 10 in the morning. I got rather nervous calling the hospital cafeteria after they started questioning whether I was truly ordering again for the patient in the room. He took a walk all over the ninth floor. My job was to follow with his IV pole, and I felt as though I were walking a rabid squirrel! He tried to meet and talk to all of Michael's nurses and doctors, finally deciding that Michael had way too many friends. He even helped to remove his own IV. On the way out, he stopped at the information desk to let them know: "I'll be back, but I'll only be visiting from now on."

We are so thankful that he was willing to do what he could for his brother and pleased that he had such a pleasant experience. He proudly saved some souvenirs from his little adventure. Anyone want to guess what he plans on taking to school the next time he has Show and Tell?

Our Own Little Superhero

It's official. We need to get Timothy a superhero costume. On second thought, maybe his hospital jammies will be just perfect.

Timothy did such a wonderful job today. The harvest of his bone marrow went perfectly this morning. He had a difficult time waking up from the surgery; the anesthesia-haze frustrated him for quite a while. He joined Michael in his room for the transplant and alternated between watching and napping. He enjoyed getting lots of visitors and receiving cards from his classmates and balloons from family friends. He had really been looking forward to being able to order all the hospital food that he wanted, but he struggled with nausea and vomiting well into the evening. He is fast asleep at this point, and I'm praying he will wake up to feel much better tomorrow.

Timothy's attitude throughout has been so sweet. At one point during the transplant while resting on the bed with Michael, he quietly asked, "So is my blood helping you to feel better yet, Michael?" He and Michael played a board game together when the transplant was over, and it was incredibly touching to watch the two of them do something so simple and "normal" on such a huge day for our family. When asked later whether he thought he or Michael had had the worse day, his immediate response was: "Oh, Michael. He has to spend lots more days in the hospital than me!" Probably the most important conversation with Timothy took place on the way to the hospital early this morning. He told me that he was happy to give his blood to save Michael's life just like Jesus was happy to give his blood to save all of us. Timothy certainly puts lots of things into proper perspective for us.

It will be many days before we are able to tell what the result of this transplant will be for Michael. One thing is sure, though. Today Timothy has certainly done everything in his (superhero) power to help his big brother.

The BIG Day

It has finally arrived! It's bone marrow transplant day! As I type, Timothy is in surgery to harvest his bone marrow. They anticipate that all will be ready to then transplant Timothy's marrow into Michael by early afternoon.

Timothy did quite well with the preparations. He mentioned that he was a bit scared on the way here, but it didn't slow him down one bit. While waiting for the surgery, he insisted on doing the school work that he will miss today and tomorrow. He checked several times to make sure that he was going to get a popsicle and get to order some hospital food ("breakfast AND lunch so I don't miss any of my meals") when he awoke. After he drank some medicine to make him sleepy, the real fun began. He began striking muscle poses, grunting, and talking rather slooooowly. I managed to catch most of it on video. I'm sure it will come in handy some day. He will be sedated for the entire procedure. They anticipate a little soreness and will keep him overnight to monitor any pain or reaction to the anesthesia. He will be allowed to visit with Michael while the marrow is being transplanted. His room for the night will be right next to Michael's.

Michael's day will be far less medically exciting. He will simply watch what will become his new bone marrow drip into his central line and wait. And wait. Right now he is worn out and tired but eager to get this new chapter started. The strict rules in the bone marrow unit are lifted for this one day, and all his siblings will be able to come visit this afternoon. It will be wonderful--noisy, but wonderful--to all be in the same room for a little while.

We can't possibly say it enough: Thank you for your prayers for Michael, for Timothy, and for all of us.

A Wonderful Thought!

Sometimes we're a little slow. Michael and I just had a moment of clarity that we thought we'd share with you. In the post earlier today, I mentioned that he was finished with his chemo. What we didn't fully appreciate was that he may indeed be totally finished with chemo . . . forever! If God allows this bone marrow transplant to work, to heal him, to provide a cure, then he will never need chemo again. Michael thinks that we should have had a little party as the last chemo was administered. It's a few hours late, but we are having a quiet celebration here!

WARNING: Rated R/G for "Really Gross"

This post is probably not for the faint of heart. I promised many loving friends to keep them up-to-date on Michael's journey, and I'm not sure how to do that without including some of the more unsavory aspects of his situation. He is still in good spirits and has finished all his chemotherapy. Feel free to skip the following paragraph if you'd like.

The job of most chemotherapy drugs is to slow, prevent, or interrupt the growth of cancer cells. To put it simply, the drugs have the same effect on normal cells, too. One of the big problems Michael is facing now is mucositis, a rather common side effect for bone marrow transplant patients. The cells of the mucous lining of his digestive tract are being destroyed; that lining is becoming inflamed and ulcerated. Painful mouth sores were expected. We are so thankful that he is not struggling with any of those mouth sores, but his throat (and probably on through to his stomach and intestines) is quite swollen. His saliva is so thick that it is nearly impossible to swallow. The result for him is that he is frequently gagging and vomiting. He also finds eating or drinking to be nearly impossible. Though this is a minor problem compared to some that others face, it is his current prayer to be rid of this issue.

Other than the mucositis, he seems to be doing pretty well. Today was full: he learned a new card game, made a "Go, Cards!" poster, did some experimenting with tin foil art, and had a physical therapy session. Tomorrow will be a day of complete rest from all chemotherapy.

I apologize for being rather graphic in this post. You can't say that I didn't warn you!

Squeaky Clean

The first of the two chemotherapies that Michael must have has been the most interesting so far. He received it Saturday and Sunday, and he seemed to tolerate it rather well. He was only sick a few times and spent the rest of the time resting, playing games, doing his homework, and watching the Cardinals' games.

This chemo has some strange side effects, though. It leaches through the skin. They anticipated that it would give Michael a nice tan, but unless it has yet to be seen . . . He must be related to his mother and is genetically unable to look any darker than Snow White. He is required to clean his skin every six hours. Every time the clock reaches the hour of 6 or 12, he must stop everything (including sleep--not his idea of fun) and shower WELL. This requires a complete change of clothing and all bed linens. The showering will continue for a while, but this chemotherapy is done. Never has a junior high-aged boy smelled so clean!

One more chemotherapy to go, and then it's on to the bone marrow transplant.

Cross One Off the List

Michael's days of radiation are over. His report is that "it wasn't too bad." Each of the last three days, he was transported twice via wheelchair for a long walk through connecting walkways to the radiation department of Barnes-Jewish Hospital next door. After the typically long wait there, he would undergo about 20 minutes (10 minutes on each side) of total body irradiation. He would simply be positioned in an awkward sitting pose, be secured with various velcro straps and tape, and then . . . sit. Then they'd swivel him around and repeat the process. Even though it was boring, we pray that it accomplished its purpose.

The immediate side effects were not too severe. Thank you all for your specific prayers. After the initial day's sickness and jaw pain, he did not suffer much anymore. A general "sick" feeling remains, but it doesn't bother his spirits too much. The radiation is somehow quite harsh on the saliva glands which causes the jaw pain and some other odd reactions in the mouth. Again, Michael seems to endure those things with quiet grace. The long term effects of the radiation may not be felt for quite a while. He is expected to struggle with any exposure to the sun, cataracts, and some stunted growth within the next decade.

We are happy to say that we can cross off "radiation" and move on to the next challenge. Each day brings its own unique trials, but one of my favorite verses (Ps 46:1) says: "God is our refuge and strength, a very present help in trouble." What an amazing promise!

Let the Games Begin.

Today began two important events: the World Series and our bone marrow transplant adventure. Michael entered the hospital on Tuesday afternoon and settled in. His radiation began early Wednesday morning. He is to undergo twice daily radiation through Friday. The first day went as predicted; he experienced some sickness and rather intense jaw pain. The day ended on a great note when he watched his Cardinals win the first game of the World Series! He even muted his television to listen to the fireworks live.

He will start his chemotherapy on Saturday. One drug will require four showers a day but will supposedly give his skin a nice tan. Next Wednesday will be a day of resting from all treatment in preparation for the transplant the following day.

The time here will be long, so the plan is to keep him busy. His art and occupational therapists are teaming up today to help him make a "rally squirrel" rally towel for the game tonight. He'll see a physical therapist regularly. The room is outfitted with a great tv and Xbox. He plans to begin learning to play the new guitar that his church youth group's gifts helped him to purchase. (I would add the fact that I'm always armed with exciting school work that he can do, but he has forbidden me to mention it.) A calendar hangs in the room to chart each appointment or event and help him to count down the days until the hospital stay can end.

We cannot be sure when the end will be for this stay. Until then, we will just be content to cross the days off one at a time.

Time Out!

We hit the pause button as a family this past weekend. These next weeks will prove to be a huge trial for all of us--Michael foremost, parents, and siblings. Dad and Mom will take turns spending days and nights at the hospital, so we can share time at home with the children and at the hospital with Michael. Except on transplant day, the four siblings will not be able to visit Michael at any point over his stay in the hospital. (They are permitted to look through two glass walls at him, but that's not going to entertain the troops for very long.) Given these huge changes, we decided to spend some dedicated time together.

We've never taken one of these "staycations" that are so popular these days, but that was our only option. We'd planned one night at a hotel (love those business account hotel points!) for swimming, jumping on beds, junk food and breakfast buffets, but Michael's recent surgery was rescheduled which made those plans impossible. Instead, we hid out at home--"camping out," playing games, watching movies, snacking, and relaxing. We took some time to visit a nearby state park and play, walk, and take lots of pictures. We stayed up late and got up later. It was a great final celebration of what used to pass as "normal" in our little "party of seven."

I don't know that we are ready for what lies ahead, but we are quietly turning the page to begin the next chapter.

Hamsters on a Wheel

For the past two and a half weeks, we have truly felt like those poor creatures who run themselves into exhaustion and end up right where they began. (Lest you think that I feel even a slight compassion for hamsters, let me assure you that I view them as part of the disgusting rodent family that should NEVER be elevated to pet-status. My pet peeves, however, are a topic for a different blog entirely.)

The normal path to a bone marrow transplant takes several months. Much preparation is done to make sure that the patient's body is strong enough to face transplant and to establish a baseline for future measurement and testing. We have had to squeeze the usual timeline into a little over two weeks. We've spent almost every day at the hospital running from scan to test to appointment. Michael's had his eyes, ears, teeth, heart, lungs, kidneys, and countless other organs checked and rechecked. He even spent several hours taking IQ, personality, and a version of standardized achievement tests. He's met with doctors, advocates, coordinators, and therapists. We even had to throw in a couple of appointments for Timothy to clear him as a healthy, viable donor. Everyone has done his best to make the experience pleasant for us (We love you and your obsessive calendars, Erin F.!), but it has been a true whirlwind.

The final step for clearance to head to BMT was a simple surgery today. Michael needed to have his port (the internal line for all IV access) removed and a broviac (an external option that provides multiple lines to access) inserted. The surgery was only 45 minutes long, but we were there for eight hours. He is still experiencing a good bit of pain and has been quite sick. He was disappointed to not be able to keep his port as a souvenir, but will settle for the battle scars on his chest. He's also not a big fan of the lines that now protrude from his chest and will limit his activity. He said that this has been his worst day so far. "Bring back the chemo" was his opinion.

The bottom line is that Michael and Timothy are cleared for the transplant . . . and . . . we are tired!

To BMT or Not To BMT?

I never thought we'd face this question. Bone marrow transplants sound ominous, but it turns out that our answer was rather easy!

We could continue with the chemo and inhibitor drug for the next three years with the hope that they would prove effective in keeping his cancer in remission. There is no assurance that he would maintain remission, though. The best number that they could provide was "better than 60%." If at any point, Michael was not in remission, he would head to BMT. Looking down the road of the next three years, we learned that he would repeatedly face the same chemotherapies that made his last round of chemo rather rough.

On the other hand, a successful bone marrow transplant may provide a complete cure. Many struggle to find a suitable donor, and having a perfectly matched sibling donor is considered to be a terrific opportunity. The actual transplant and the recovery come with a long list of risks and side effects, but it should all be over in about one year. The year would be unpleasant, somewhat lonely, and full of many little battles, but Michael could resume a "normal" life far sooner.

Michael's initial reaction never changed--BMT. We spent a little more time praying and learning as much as we could. The doctors did not counsel us to make the decision either way. There was a rush to decide, though, because Michael was due to have another bone marrow biopsy. A "remission" result would make him ready for transplant and at a perfect "strong" time to handle the transplant. So, in a short time, we decided to undergo the BMT.

Michael will enter the hospital on Tuesday, Oct 18th. The first week will actually be a final round of chemo with radiation. The radiation is new for him, so we are praying that it will go well. This round is to remove any final cancer cells and prepare some room for new bone marrow. On the 27th, Timothy will have a sedated procedure, much like Michael's biopsies, to harvest his bone marrow. The actual transplant will take place about an hour later and is rather anti-climactic. The marrow will simply be hung in an IV bag and slowly infused. Then begins a long period of waiting for Michael to battle any rejection, to fight possible infection while he is completely susceptible, and to recover to normal white blood cell levels. He may be able to go home as early as 4-6 weeks later. Once home, his new lifestyle will be very protected for a long time.

Even though this seemed like a difficult decision, it ended up being a simple one. To BMT it is!

It Will NEVER Get Old!

We got the call today that Michael's biopsy last Friday showed that he is still in remission! "Remission" is suddenly becoming one of my favorite words; I don't think hearing it will ever get old.

Being in remission was the first step toward a bone marrow transplant. We're taking a rather warped path to get there which I'll take time to explain soon. In the meantime, we are just rejoicing that God has blessed with the good news of success in Michael's treatment so far. Thank you to each one of you that have prayed with us.

Diary of a Wimpy Kid

Michael's dreams of being a broad-shouldered, muscle-bound, hulking specimen of manliness died long ago. He's been wearing "slim" jeans, most even with those hidden elastic, cinching bands, since his toddler days. I can vividly remember the seasons that he insisted on tucking in his sweaters and sweatshirts just to help keep his pants up. He's accepted that he's built more for basketball than football (Sorry, Uncle Troy!).

The past days have made him far more aware of his physical limitations. The effects of his cancer and its treatment are becoming quite obvious. Michael struggles to stay awake for more than a few hours. His muscles have become so weak that even walking causes the uncomfortable soreness that most of us associate with those dreaded workouts. His energetic periods are predictably short.

His response has been interesting. Though he certainly has his moments of disappointment, he has PUSHED himself. He has gotten on the treadmill several times, even if only to walk for a half a mile. He has chosen school and church over sleeping or relaxing several times. He even spent a few minutes last night outside sighting in his shotgun for youth hunting season this weekend. I don't think he'll remember the times that he ended up thrown to the ground from the gun's recoil if he "bags his deer"!

He observed recently when thinking about keeping up with his classmates: "Mom, I was never the tough kid in class, but now I'm going to have to work hard just to be the wimpiest kid in class!" I was immediately reminded of God's promises in Isaiah 40:29-31. How thankful I am to know that "He giveth power to the faint; and to them that have no might he increaseth strength . . . they that wait upon the Lord shall renew their strength . . ."

Christmas in September

Jeffrey prayed for breakfast this morning: "Please, let today be the day that they let Michael come home." Moments later the phone rang with news that Michael was finally going to be released! As we piled into the car to head to school, Timothy said that he felt like it was Christmas Day and he'd just gotten exactly what he wished for. That rather perfectly describes the way we all feel.

Thirteen days after he began a four-day round of chemo, Michael is finally home. He is completely drained, achy, exhausted, but . . . home! Merry Christmas, everyone!

The Blessing of "C. diff"

Michael is still at the hospital!  We are finishing day eleven for this round.  For reasons the doctors can't explain, his body is taking far longer than expected to "flush out" one of the chemotherapy drugs.  He started clearing the drug quite well, and he has been terribly close to being sent home since last Tuesday.  Each day brings more blood tests and more disappointing results.

Since last Monday, Michael showed some symptoms that made them concerned.  He was tested for C. diff (a bacterial infection of the intestines--trust me, that's all you want to know); he's got it.  It was a flurry of activity when they diagnosed the C. diff.  They slapped a quarantined notice on his door, wheeled a special cart of gowns and gloves outside the room, and issued the lock-down.  While that means that Michael can't leave his room, it also means that we can't have a roommate.  We have had some lovely roommates, but no one really wants to have a roommate.  Sharing a room affects every aspect of your stay.  The C. diff has turned into a real blessing!

(Michael also wants me to note that getting to watch the past few Cardinals baseballs games on tv has been a pretty good perk, too.)

The Third Round

Michael went back to Children's on September 16 for his third round of chemo.  This one has been the worst.  An anticipated three to four day stay has turned into almost a week.  He has been quite sick, has developed an infection, struggled with a fever and some difficulties with his heart, and can't seem to flush out the chemo to the levels required to be able to leave.  It's been difficult to accept that there is nothing that he can do to make his body work faster, but he's doing his best to have a good attitude.

Special Blood

Once the topic of bone marrow transplant (BMT) arose, the rest of the kids in the family became an important part of Michael's future.  Having a family donor as a bone marrow match is of great benefit when looking into BMT.

The four siblings went to their pediatrician one morning to get their blood drawn.  They were excited to see if they could help Michael and to get to miss an hour of school!  They each did very well.  They sat so still and didn't make a peep.  Kristen sweetly asked the nurses:  "Are you only going to get blood from my arm?  I have LOTS of bloods all over, and he can have it all!"  The nurses were impressed with their willing attitudes.  The kids certainly had a story to tell when they got back to school.

We waited to hear if any were a perfect match for about a week.  Then the call came . . .  Timothy is a perfect match for Michael!  It was a wonderful answer to prayers and made BMT a viable option for Michael.  Timothy's response was incredible.  He tells everyone who will listen that "he has special blood that can save Michael's life" and shows them all the imaginary hole in his arm where they found that "special blood."  He is looking forward to the anticipated time that he will get to spend in the hospital with Michael and all the attention that he'll get during the preparatory appointments in the meantime.  Michael's response was a bit guarded at first.  Since Timothy's greatest aspirations are to be a beautiful ballerina or a sparkling fairy princess, Michael was concerned that some of that insanity might seep in during transplant.  Once we assured him that he would still prefer basketball to bedazzling, he was excited.

The decision about BMT has yet to be made.  Michael will have another bone marrow biopsy in early October.  The results of that test will determine which course will be best for Michael.

Life in the Seventh Grade

Michael was excited to be able to go to school for the first time on August 25, having only missed three days of the school year.  He quickly found himself surrounded by great friends who were offering to carry his backback, help with his schedule, and get him caught up on homework.  His teachers greatly extended themselves to help him fill in the missing days and know what work he could do at home.  What a blessing Christian friends and a Christian school have been!

Since then, Michael has only missed school on the days that he was in the hospital.  He has been working hard at home and in the hospital to keep up to date on his work.  I'm not sure that he enjoys having a mother who is a teacher, but it's worked out well that I am able to provide some help.

Michael enjoys the social aspect of school.  He had fun one day staying after school to watch a soccer game.  He admitted that he would have rather been on the team playing than sitting in the stands watching, but maybe next year??

"Fun" at the Hospital

Though it sounds unbelievable, the time Michael has spent at Children's is not all bad.  The staff is focused not just on making the children comfortable but allowing them to have some experiences that could actually be ones they would enjoy.

During his second round, the St. Louis Cardinal's mascot Fred Bird came for a visit!  Fred Bird came with the umpires from the Cards game the night before.  The umpires and Fred Bird spent quite a while visiting, brought gifts, and took lots of pictures that Michael will be able to display.  Different groups within the hospital have provided Michael with lots of gifts from blankets and pillows to games and books.  He is truly learning to appreciate the small joys in the midst of the larger trial.

So many of YOU have made his time in the hospital comfortable.  We've been amazed at how many have come to visit.  The snacks, the books, the movies, the games that you've brought or sent have made the time go by as quickly as possible.  We thank God for each of you and your thoughtfulness.

The Days that Changed Everything

On July 19th, after spending a week at camp and just seeming too tired, listless, and pale for reasonable explanation, we took Michael to see his pediatrician.  It was only his second "sick" visit to his doctor in his life.  It didn't take her long to send him right to Children's Hospital in St. Louis with suspicions ranging from a virus to cancer.  Before the day was over, the diagnosis was made--Acute Lymphoblastic Leukemia, and Michael was admitted into the hospital.  He spent the next month undergoing chemotherapy while the rest of our family grew accustomed to a new "normal."

Michael suffered few side effects from his initial round of chemo.  We were all thankful for this and the way that so many wonderful family and friends surrounded him and us with great care.  On August 19, we learned that Michael's leukemia was in remission.  What an answer to the prayers of so many!

Michael returned after a few weeks for another round of chemo.  It was more difficult for him, but it was only days instead of weeks.

His first real setback came quickly after that second round.  On the evening of our celebration for Kristen's fourth birthday, Michael developed a fever and had to return to Children's for several days.  These fevers are said to be typical, but they are frustrating.  While we can plan for scheduled visits to the hospital, these surprises leave all of us a little unsettled.

The past weeks have been a whirlwind of activity, information, and emotion, but we have seen God bring us through each step.  Though it's hard to say, we are looking forward to what He has planned for Michael and our family in the coming months and years.