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!