A big surprise

Liz:

To say that today has been intense would be an understatement.  There is a reason why they call it "intensive care."  Last night after Tim posted and just as we were about to leave to get some sleep, we noticed Michael's lip quivering.  Then we noticed his eye twitching and then the entire right side of his face was randomly twitching and quivering.  The nurse came in and then several doctors.  They weren't sure if he was having a seizure or some other neurological issue.  They began giving him anti-seizure meds that didn't have any effect.  We stayed by his side for another hour but after midnight, decided to slip out and go get some sleep.  The nurse called us about 1:30AM to let us know that the neurosurgeons think that the muscles of the right side of his face were randomly firing as a result of the surgery and not a seizure.  Eventually, around 4 AM it resolved itself. 

We arrived back at the hospital around 9 this morning and found Michael inconsolable.  We tried to comfort him while we waited for a post-surgery MRI which kept getting pushed back.  Finally they wheeled him away for the MRI and we had about an hour break before we met back up with a screaming, inconsolable, miserable baby.  We spent the next hour trying to get him to feed from a bottle and then a syringe but he would not eat.  We were very concerned he may not be able to eat because his facial muscles are mostly paralyzed and his eyes blind so it looked like he might need a feeding tube.  But, I decided just to see what would happen if I offered to nurse him.  Amazingly, he latched right on and ate perfectly and has been able to eat excellently since.

After being able to eat, many other things have since stabilized.  He hasn't needed as much pain medicine since most of his crying was because of hunger and not pain.  His blood pressure is under control so his arterial line (like an IV in his wrist) was removed and he no longer needed a catheter.  They removed the oxygen he was on and he has played with a couple of toys for short periods of time.  His vital signs are looking really good. 

Just before 6PM tonight, our nurse came in with a big surprise.  "Change of plans!" she said, "Michael is doing well enough that you are moving out of intensive care and going up to the 6th floor.  Pack your stuff!"  We were a bit shocked.  Less than a day in intensive care?  We spent 11 days in intensive care after the last surgery.  But Dr. O'Neill has confidence Mikey will be fine.  Last night after the surgery he said if everything went "stupendous" we'd be out by Sunday.  I guess we are doing better than that.

So we are now in room 618 and to be truthful, things are still a bit intense.  Michael's monitoring needs aren't as critical, but he does need a lot of TLC.  He did just have surgery yesterday.

One more blessing.  Dr. O'Neill came in this afternoon and said that Michael's post-MRI scan showed no evidence of tumor remaining.  Dr. O'Neill is pretty reserved about being happy about things and we could tell last night and today he has been pretty happy with how things have gone.  Last night, he said when he opened up Michael's head, it was very clear what was tumor and what was not tumor.  That is a huge blessing as he could be pretty precise about what to remove and it did not take him long to know what to do so the surgery went more quickly than expected.  In addition, Michael's vitals remained stable and strong throughout the surgery.  We asked what could have gone better and he said he wished the tumor would have just peeled off but it was still pretty stuck to the brain stem and cerebellum so he had to be a bit aggressive to remove it.  But overall, things have gone much more smoothly than expected.

Right now, besides pain management, we will be monitoring him for neurological issues, like the facial paralysis and low vision.  We are hoping they improve as he heals.  And we hope he can rest well tonight. 

Also, yesterday, a blog friend wrote a beautiful piece about cancer and wrote some beautiful things about our family and Michael in her post.  I have not met her yet, but I have been following her blog for a couple of years and have always been inspired by her writing and life.  You can read what she wrote here.  Thank you Catherine for your very kind words.

Here are a few pictures from the past two days of our journey:

Early arrival, daddy and Mikey all smiles in the parking garage ready to go!

Chewing on some pedialyte to hold off the hunger pains because surgery got moved back 4 1/2 hours.  Poor baby.

Waiting and waiting and waiting for surgery

Tim holding crying Michael this morning

It might look like he's sleeping but he's actually crying.  His face cannot move so the sound just comes out of his mouth.

Not crying - thank goodness, but unable to see, Michael resting in his bed this afternoon.  No pictures of me since Michael has puked on me multiple times today.  Not really something we want to take pictures of.

As always, we cannot say enough thanks to each of your for your faith and prayers.  They are real, the power in them is real, the strength is real.  We feel our Heavenly Father and the Savior walking with us through this journey and see divine miracles and blessings and we know much comes from the petitioning on your behalf.  Thank you all.

Post-Surgery

Tim:

Michael is out of surgery now.  Dr. O'Neill said he was very pleased with how everything went.  The two pieces of tumor on his cerebellum were removed without a hitch.  One piece of tumor on his brain stem was pretty stuck on there, and they worked very carefully to remove it.  Fortunately his blood pressure and other vitals remained stable this time around and they believe they were successful in removing it.  The other piece of tumor they had seen on the brain stem in the MRI turned out not to be tumor after all, so they didn't have to do anything with it.

So overall things went very well as far as we can tell.  Michael is currently awake and pretty miserable right now, so Liz is rocking him and the nurses are giving him pain medication.  It's still too early to tell if he has further damage to his 6th and 7th cranial nerves (the facial and eye nerves) from the surgery, hopefully we'll have a better feel for that in the morning.  He will also have another MRI tomorrow to see if it looks like any tumor is remaining.

It's been an exhausting day.  We're grateful for all of the prayers on Michael's behalf and that the surgery appears to have gone well.  We'll get a better feel for things tomorrow and do another update.

Pre-Surgery

Tim:

Quick update.  Today we woke up early to give us enough time to get to the Children's Hospital by 8:30am.  Surgery wasn't scheduled until 11:30am, but there's plenty that needed to happen before surgery began so they wanted us there three hours early.

When we arrived at the hospital we discovered that an emergency surgery had been added to the schedule before Michael's surgery, so his probably won't start until 4pm at the earliest.  As is often the situation here, ours is a case of "hurry up and wait".  We rush to get to the hospital on time, only to spend hours waiting for our turn!

The poor kid hasn't been able to eat anything in anticipation of his surgery, so now that it's been delayed he's starving.  He's been patient, though, hanging in here like a real trooper.

We were fortunate enough to get a sleep room for tonight.  Unfortunately it's not much more than a hide-a-bed, but it worked fine for a quick afternoon nap for Liz.  We were also able to reserve the Ronald McDonald house down the street from the hospital, so we'll plan on staying there for the next few weeks.

Right now we're just hanging tight is a small pre-op room.  Things are starting to pick up a bit as nurses and doctors are talking to us and making their final preparations.  Just a few minutes ago we spoke with Dr. O'Neill, Michael's brain surgeon, and were asking him questions about the procedure.  Towards the end Liz asked me if there was else I wanted to "pick his brain" about.  Her unintentional choice of words gave us all a good laugh.

It looks like they're going to start around 4pm.  Since it's a 6-8 hour surgery it's going to be a late night tonight.

MRI Results

Tim:

Today the children didn't have school, so our whole family went to the Children's Hospital in Denver for Michael's MRI.  Michael had to be put to sleep for the procedure to keep him perfectly still, so he wasn't allowed anything to eat or drink.  I stayed in the waiting area while Liz took the other kids to pick up Grandma Bellamy from the airport.  Grandma then watched the kids play in some of the play areas while Liz and I talked to the doctors in a private room about the results.

The results are...Michael needs to have another surgery.  The scan showed four areas of the brain where there is still tumor remaining that needs to be removed.  Two of those areas are on his brain stem, the other two are on his cerebellum.  The surgery will be this Friday starting around noon and will probably take about 6-8 hours.  (His first surgery was 8 hours.)  The surgery is necessary to give Michael the best chance of long-term survival.  However, the surgery carries a high risk of complications and permanent disabilities.

We knew that another surgery was a real possibility and tried to prepare ourselves emotionally for it, even while remaining hopeful he wouldn't need it.  But it was still really tough news to swallow.  Our conversation with the doctors ranged from serious to light-hearted as we tried to both internalize the news and break the tension.

We know that Michael is in the Lord's hands and really appreciate all of the prayers in our behalf.  We're grateful to have a few days of advanced notice this time around to prepare for the surgery and Grandma here to help with round two.

This is how our children greeted us this morning--the girls had climbed into Spencer's crib and were singing.  Of course, Michael didn't want to feel left out.

Arriving at the hospital for the day of the big MRI.

 This image shows two of the remaining visible traces of the tumor.  They are a little bit lighter in color, one is on the right side of the brain stem, the other a little bit further to the right.

Baby Detector

Tim:

On Monday night in the middle of the night I heard the smoke detector chirping due to a low battery.  (Is it just me, or are those things pre-programmed to hit the low battery indicator in the middle of the night?)  I knew there was no way I'd be able to sleep through it, so I hunted down the culprit and replaced the battery.

On my way back to bed I heard Michael whimpering in his crib.  I figured his own "battery" was starting to run low and he'd be "chirping" any minute for food, so I mentioned it to Liz.  She went to nurse him and came back a few minutes later asking for the thermometer.  She checked his temperature: 101.  That meant we had to call the Children's Hospital.  While Liz tried to get through to the doctor on call, I held Michael and checked his temperature again: 102.  Liz started packing a few things for a trip to the emergency room while she waited for the doctor to call her back and I checked his temperature again: 103.  Within a few minutes his fever was up to 104, and at 3am and Liz and Michael were on their way to Children's Hospital.

(Incidentally, I've never been so glad to be awaken in the middle of the night by a smoke detector.  Michael was too weak to cry very loud, and there's probably no way we would have heard his quiet whimpers.   We actually witnessed his fever spike that night; who knows how long he would have had such a high fever before we noticed had the smoke detector not woken us up?)

At the hospital, the doctors ran some blood work to see if a bacterial infection was causing Michael's fever.  From what we could gather, the doctors weren't terribly concerned about him coming down with a virus, but were deeply concerned about a bacterial infection.  Hence the need to take him to Children's Hospital every time his fever hit 101 or above.  Liz asked them why.  They explained that when bacteria cells divide, they release toxins into the bloodstream.  An immune system weakened by chemotherapy can't deal with those toxins (not to mention the rapidly dividing bacteria) and the body's vital organs quickly shut down.  In the early days of treating children's cancer with chemotherapy, doctors would try to allow fevers to run their course and were alarmed when many of the children would die within a few days. When they discovered the problem to be bacteria related, as long as they can treat it quickly the child's chances of survival increase dramatically.

Fortunately, the doctors found no signs of a bacterial infection in Michael, so the fever was likely due to a virus such as the flu.  Whew--just the flu!  Once his fever was back under control he was free to go home later that morning. 

We had several friends come over on Tuesday to help hold down the fort so I could go to work and Liz could get an hour of sleep and take Spencer to the doctor to get treated for a double ear infection.  Unfortunately, by Tuesday afternoon Michael hadn't been able to keep any food or liquids down and his skin and lips had turned gray.  The doctors were concerned about dehydration and wanted us to take him back into the hospital if he didn't improve within a few hours.  Liz and I were completely exhausted and neither of us relished the thought of having to spend another night in the emergency room.  So we did everything we could to nurse Michael back to health in our own home.  I sent Liz to bed around 8pm while I tried to get Michael to take a bottle so he could get some fluids back in him.  No dice.  We had a neighbor get some pedialyte for us and I fed it to Michael a tiny bit at a time through a syringe.  Fortunately he managed to keep down a few ounces.

Liz and I traded off caring for him throughout the night, and by morning his normal color had returned.  He was still having a hard time keeping anything down, so Liz took him back down to the Children's Hospital that morning to get some IV fluids in him.  All day long he faced a roller coaster of doing well for a while and being just about to go home, and then spiking a fever and throwing up some more.  They discovered Michael had an ear infection as well and started giving him some antibiotics for it.  But eventually Michael was stable enough to go home without having to spend another night at the hospital.  We fully expected to return to the hospital on Thursday to get more fluids in him, but by then his immune system was starting to kick into gear again and he was doing much better.

Assuming Michael is well enough, the plan is still for him to get his MRI on Monday to see how much tumor remains and if he'll need surgery to remove it.  He seems to be finally getting over his RSV and host of other illnesses (knock on wood) so we think the MRI will be a go.  We really appreciate the family and friends who are fasting and praying in Michael's behalf.  We'll send an email and/or post on the blog on Monday when we know the results of the MRI.

Spring Break

Tim:

This week was spring break for the kids, so Liz took all of them down to Denver with her for Michael's weekly visit.  The kids think the hospital is so much fun.  They have a playroom for siblings where they played with lots of fun toys during Michael's appointment.  There were clowns at the hospital who painted hearts and butterflies on their cheeks.  And there was the child life specialist who gave them some crafts to work on while she talked them through some of the concerns they have about Michael's cancer.  Our children each decorated their own worry box where they can write or draw pictures about their worries and concerns and then put them in the box.

Our children are each struggling in their own way in dealing with Michael's cancer.  From nightmares about dying from cancer, to not wanting to eat the delicious meals brought in by our friends, to fighting with each other like cats and dogs all day but then sleeping in the same bed at night for comfort, what they are going through is very normal for siblings of cancer patients.  We hope to be able to help them work through their concerns and worries.

 Two angels sharing a bed at night for comfort

Michael is still trying to fight off his RSV, so the last few weeks when he's gone in for his appointments he's been under quarantine to keep it from spreading to other kids.  The doctors and nurses who treat him have to wear special gowns and face masks when they come into the room to prevent them from getting and spreading the virus.  From the coughing due to the RSV, to the thrush in his mouth from a weakened immune system, to the nausea and vomiting from the chemotherapy, Michael has been pretty miserable this week.  He's such a brave kid, though, and he has had some really sweet moments as well.

A cute magnet some friends gave us for our "Little Brave"

 Part of Michael's therapy involves play time with his 

Welcome Back balloon

 After a long day, he's wiped out!

A week from Monday (on March 26) we have another MRI scheduled to get a good look at the current state of the tumor.  Basically if the doctors see any tumor remaining that they think they can remove, they'll schedule another brain surgery to try and remove it.  To give Michael the best long-term chances of survival, they need to remove all visible traces of the tumor before he starts radiation.  We hope and pray he won't need a further surgery, especially since it would heavily involve his brain stem and potentially create further complications.

Another world

Sometimes I feel like I've entered a world that I don't want to be apart of, but I am here and there is no way to leave.  I wonder sometimes, "How did I get here?"  I take a guess at when it all began, but like so many things in life, there really is no tangible beginning.  Was it when Michael was diagnosed?  No, he already had cancer.  Was it when Michael was born?  No, he already had cancer.  And then I remember the day that I found out I was expecting my fourth baby, and how incredibly happy and excited I was.  I had worked hard to come to that time.  I know I have a little addiction for babies.  Oh well, I think it's a good one to have.  I feel humbled and grateful that I am Michael's mother.  I wouldn't trade it for the world that I wish I lived in - the cancer-free world.

Today, we started another round of chemotherapy.  Despite Michael testing positive for RSV on Saturday, we went ahead with the infusions because he is getting better.  But we are in isolation because of it and everyone who enters our room is donned in special yellow gowns and masks to prevent the spread of his virus.  It takes several days for the chemo to work.  Cancer has interesting trade-offs:  rushing to the hospital at a simple fever, yet infusing toxins into the body while already fighting a dangerous illness.  Risk factors are constantly being assessed against the ultimate risk of the cancer growing, spreading.

Here is what chemotherapy looks like:

I like the "high alert" in bright red on this with cute baby in background

This is the carboplatin nice and bubbly

Chemotherapy is chemicals.  Very toxic chemicals.  The basic chemotherapy, like the ones Michael is getting, kill all rapidly dividing cells in a body.  These usually are hair cells, bone marrow cells (white and red blood cells and platelets), and your gastrointestinal tract cells.  Hence the common side effects for chemotherapy are hair loss, compromised immune system, anemia (red blood cells unable to deliver oxygen to the body), difficulty with the blood being able to clot, diarrhea, vomiting, sores in the mouth, ulcers, and anywhere along the GI tract. 

The chemo solutions are very precise and mixed immediately prior to administering them by a special lab under special protocols here in the hospital.  The nurses wear eye protection and gloves when handling them.  The solutions simply run from an IV pole into Michael's port on his chest through a large butterfly needle (seen in this post).  Sure makes me feel excited to see it plugged into Michael (not really).

But he handles it well.  I am sometimes amazed at how strong his body is.  Amazed. 

The in-between chemo week

Where were you at 4:00 AM Saturday morning?  This is where we were:

Just a bit of a scare.   As much as we tried to prevent it, Mikey and I both caught that awful cold that has been going around our family (as well as like the whole world, I hear).  On Thursday, we had a check-up in Denver where they thought everything was fine.  But that night, our nurse called to let me know that Michael's blood counts were extremely low and we needed to be ultra careful with him.  Any fever above 101 he needed to be seen at the hospital.  The reason for this is because chemotherapy had essentially killed Michael's immune system making him unable to handle any bacterial infection.  If he got one, it could ravage his body in just a matter of hours.  Sure enough, at 2AM he was running a fever of 101 and so off we went, expecting we would be staying for about 2 days to treat him for an infection and watch his blood counts.  But after another blood draw in the ER and some waiting, great news arrived that his blood counts had bounced back significantly since Thursday morning.  He was out of the critical zone and could fight an infection on his own so we got to go home!  We were so relieved.

And then we came home to a house that looked like this:

Anyone else having it rough?

It's so hard to be sick and taking care of sick kids, some of them very sick.  Is it any wonder why this blog gets ignored now we are at home?  Thankfully, we rolled up our sleeves and got most of it cleaned up Saturday.

We have been patching Michael's eye this week. 

The patching is not necessarily to strengthen his right eye, but actually to make sure that the brain is getting sensory information from it.  Here's a bit of the technical explanation:  Michael's tumor grew in the way of two of the cranial nerves, one that serves eye sight and one that serves eye movement, blinking, tear secretions, facial movement, tongue movement and throat movement.  Our neurosurgeon had to be quite aggressive removing the tumor around those nerves.  He didn't think he cut the nerves, which would render them permanently useless, but he knew he damaged them and has hoped that given Michael is a baby, they would regenerate.  Hence the hoping and waiting for those abilities to come back.  Our eye doctor could see that Michael's right eye was "seeing" sometimes, but not all the time.  The brain learns so much in the first year from all the sensory information a baby receives and his biggest concern was that the brain would begin to ignore the right eye because it was only giving partial data.   Instead the brain would only accept data from the left eye which was working fine.  Even if Michael's nerves completely healed, if the brain shut off reading information from that eye, it wouldn't matter.  There is no way to get the brain to turn back on it's ability to read from those nerves.  So we patch his good eye so that the brain is getting something from that right eye for 2 hours of the day and hopefully won't begin to ignore it while those nerves heal.

And good news is that he cried tears out of his right eye today, which is a first since surgery (he's been really good at crying big tears down his left cheek but not his right).  So everyday, we see little bits of progress.

Life has marched on in so many ways as it does with young kids.

This is when Aunt Carrie was here and the kids were making their Valentines.  Mikey was eating a valentine balloon string.

One of my favorite pics of Whitney.  She starts Kindergarten in the fall.  Our physical therapist for Michael noticed her challenges with coordination and low tone and suggested some things that can help her at this age - tumbling, swimming, and a trampoline.  I feel so blessed with this therapist's comments as we have wondered for years if Whitney needed some therapy.  After all, she didn't walk until 20 months... and in some ways I just wished I would have known sooner 

I am so glad we kept the Bumbo we borrowed from friends.  We use it a lot to help him learn to control his neck and shoulders again.

 

 

Sarah (on the left) talked Whitney into playing "getting married."  I love their creative costumes.  Whitney in too-small pj's with Spencer's Sunday clothes, Sarah with a skirt draped over her shoulders.  And yes, Whitney, who is almost 2 years younger, is now taller than Sarah

Still working on healing those scabs on Spencer's face... Our nightly ritual right now is duct taping over a bandaid on his forhead, then duct tape gloves to his jammies so he can't take them off (thumbs left free of course so we can get some sleep).  We are so close we think we only need this for one more night...

He is a cute kid and has so much energy

The girls love playing "swimming pool" with their polly pockets.  Michael's ophthamologist also would like to look further into Sarah's nystagmus (involuntary eye movements).  I am grateful for Michael's specialists who are helping our whole family it seems.

This week is another chemo week so long as Michael is over his cold enough to handle it.  He is pretty sick so we will see by Tuesday what happens.

Wow.  What a crazy week.  Back to being primary caregivers, housekeepers, parent-ers, has kept Tim and I super busy.

Besides, pretending that the pocket door in the kitchen is an elevator, Spencer's favorite past time is holding his brother.  Sorry the pics are blurry.  I swear one of these days I WILL learn how to take decent photos - it just may not be this year.

Spencer happy with his bro.  Yes we are getting creative healing up those scabs on his face he keeps picking.  We've been putting gloves on his hands at night and taping them to his jammies.  We cut out the thumbs so he can still suck them - that's the habit we're least worried about right now

Spencer takes his job pretty seriously as brother

I love Mikey's gaze on his big brother in this one

Michael has been doing really well overall.  He was throwing up quite a bit over the weekend, but we were eventually able to get it under control with Zofran and Benydrl when that didn't cut it.  The oncologists practically shrug at throw-up with chemo .  "Throw-up, schmo-up," it seems like they say (they don't really, but it sometimes seems that way).  A couple other days he was spotty in that area, but mostly has kept his food down like a champ and is eating well.  And, by-the-way, I don't want to admit that some of us didn't even know that "oncologist" means "cancer doctor" when Michael was first diagnosed.

We had a check-up at Children's on Thursday and his blood counts looked really good.  His white blood cell did go down as expected, but he is staying pretty healthy.  The docs were also supposed to get a couple blood pressures on him, but they were all too busy oogling over him they forgot.  Mikey is just too fun to play with, I guess, so everyone is forgetting to do the important stuff.  We had our pediatrician get one later in the day while we were there for an ear infection for Whitney (yes, seasonal sickness is still rolling around a bunch of the kids here) and it was fine.

He also had three home visits with physical and occupational therapy this week.  They are working on helping him stabilize and turn his head, roll over, etc.  He makes progress everyday.  The OT had a hard time getting him to do some activities with his toys because he just wanted to study her face.  Now that he is feeling better, looking at people is his favorite past time.  It's so good to see his real personality emerging again. 

Today we visited the pediatric ophthalmologist.  Here's the verdict on this long-awaited visit:  the structures of his eye look good, but the optic nerves of his right eye are not firing all the time so his vision in that eye is on-again, off-again.  He is at a risk of losing vision completely in that eye so we will be patching the left eye for a couple hours every day to make sure the right eye is getting some visual stimulus on its own.   When he doesn't have the patch, we will be doing visually stimulating things in his left visual field so that the neurons in his brain learn things like color, focus and depth perception since that is his strong visual field.  The ophthalmologist says he'll be another doctor we'll become good friends with.  It's interesting, this new world we've entered.

The house is a disaster everyday, we still aren't unpacked from our hospital stay, our senses sometimes gets over-loaded with the noise and chaos ("shock and awe" is what Tim's dad said caring for young children is like - sights and sounds that MAX us out some days), but amidst all that, we are so glad to be home and together as a family.

Little Brave

Michael has been a champ handling his chemotherapy so far.  Dr. Foreman says babies might seem fragile, but from an oncologist's point of view, they are actually "tough as nails."  I'd almost forget what we are doing here, except for the kid who was puking violently in the room next door, or another child who went into a full out rage in the hallway, or the teenagers curled up on the beds, sicker than ever, or the life-flight helicopter roaring overhead, or the Hat Tree in the lobby.

You'd almost think Michael was a normal kid with how smiley and happy he is, babbling like crazy.  But when we take off his hat, we see his head that looks like this, and then we remember all he has been through.

The large butterfly looking needle that inserts into his mediport

He is our little Brave.  I was intrigued a couple of years ago after reading A Mother's Book of Secrets, by Linda and Shawni Eyre, with the idea of telling stories about a family that lives in Mirrorland - inside the of the mirrors, that looks just like ours but they go by different names.  I'd line up the kids in front of the mirror and tell them all about the "friend" they could see in the mirror that looked just like them, but lived in a different world.  The family that looked just like ours had the names Fun (dad), Cookies (mom), Butterfly (Sarah), Sparkles (Whitney) and Tiger (Spencer).  When Mikey was born, the kids asked me many times what Mikey's "friend's" name was in Mirrorland.  I couldn't think of what would fit him for the longest time and we started calling him "Bear" when he was about 5 months old because it was the only thing that I could think of. 

Fast forward several weeks when I was driving home from the hospital after several long and harrowing days after Michael's surgery.  I was reflecting on this little boy and how brave his little spirit must be inside of a body that was crushed under illness.  The thought occurred to me that he was so Brave, and that would be the perfect name for him in Mirrorland.  "Be brave, little Brave," we say to him.  And he is.

The telethon is wrapping up today.  It was sponsored by the radio station Alice 105.9 in Denver. They have been using the airtime of their station to broadcast beautiful stories of the children here at Children's.  It has been heartening to walk by all the volunteers standing ready to answer the phones - if only they were ringing more.  Most of the time there have been few calls coming in.  I'm certain it must be a reflection on the hard times economically we are all facing.  For those who have asked for the number it is: 1-800-458-kids (I am not asking for donations, but listing it here for those who have asked me).

Have a wonderful weekend everyone.  I am so sad my sister, Carrie, has to fly home tomorrow.  She had been amazing help this week.

Chemo

Liz:

We started chemo today and it went very well.  I would almost use the word ordinary.  Of course chemotherapy is not ordinary, and it's particularly extraordinary with a baby.

We arrived at mid-morning to a tele-thon fundraiser going on in the hospital atrium.  It was filled with people answering phones for the hospital.  It was sponsored by a radio station, so the dj's were set up and broadcasting in front of everyone.  TV crews were there and people taking pictures of people with large checks. 

Michael had soiled his clothes pretty well on the drive so we had to take some time to get them changed, and then we were set.  We were given a private room, well, with glass walls, kind of like a smaller PICU room.

A nurse came in and placed a needle in his port and took labs.  The neuro-oncology docs stopped by and chatted and checked Mikey.  It was good to see our oncologist again, Dr. Foreman, since we haven't seen him since diagnosis.  He is always so positive with us; I think he thinks Michael has a fighting chance at this.  Everyone who stopped by couldn't believe how cute and vibrant Michael is getting.

And then the nurse came back in, loaded up the first chemo pump and pushed "start."  It was so ordinary. Routine.

Michael giggled and played for the first round and them slept through the second.  He looks a bit pale, but is playful and cheerful.  And he's eating, especially his new found love, Cheerios.  In all, we were there for about 7 hours.  We will be doing this again tomorrow.

Thank you for keeping us in your thoughts and prayers today.

Back in the Hospital

Tim:

Caring for Michael is a lot like caring for a newborn all over again.  He wakes up 2-3 times each night to eat, he's not on any sort of schedule yet, he doesn't move around much, and he requires a tremendous amount of care.  He's a lot more aware of his surroundings than a newborn, and he smiles broadly when mom and dad are around.  He's on several blood pressure and pain medications, but nothing too significant.

 Giving Michael his medications

 A not-so-good view of Michael's shunt and some of his incisions

Our friends finished the job on our wood floor and reinstalled the toilet.  You can't even tell there was ever any damage.  We have our main floor bathroom back!

Grandpa Bellamy and Liz's sister Carrie drove out here yesterday to be with us.  Michael has been very happy to be home the last few days.  But then this afternoon he threw up during naptime.  Uh oh, that's a big sign his brain is having problems again with hydrocephalus.  We hoped it might be a fluke, but when Liz tried feeding him again he threw up all over her.  He started getting lethargic, had a hard time holding his head up, all the signs of hydrocephalus and a failed shunt we're oh so familiar with.  We called the neurosurgeon and he said we need to bring him back down to Denver.  *Groan!*

Liz and her parents took Michael to the hospital this time, with the plan that I'd come join her in the morning.  The neurosurgeon examined Michael and said that the shunt actually appeared to be working just fine.  Michael simply had come down with the same stomach flu the rest of the family has endured these last few weeks.  He threw up 4 more times in the hospital, but after an xray and some anti-nausea medication they sent everyone home.  What a relief--it's only the stomach flu!  

Liz once asked the neurosurgeon how we could tell the difference between the stomach flu, nausea due to chemotherapy, and a failed shunt.  He responded, "That's what keeps us in business."  The symptoms are virtually identical, which is why it took so long to diagnose his condition as a brain tumor in the first place.

 Back in the hospital with Grandma and Grandpa

At least eating my toes doesn't make me feel nauseous.

Home at last!

Michael recovered quickly from Monday's shunt surgery, so on Tuesday he was allowed to go home!  Yea!!!  Of course it always takes forever to reach exit velocity from a hospital, what with all the paperwork and last minute details.  But by Tuesday afternoon we were finally on our way!

On our way home!

Michael has enjoyed being home for longer than 24 hours this time.  It's going to take a while to get into a new routine with him.  He requires so much care it's like taking care of a newborn again.  I don't know what we'd do without Grandma here helping out.  

Michael spent two hours today with the physical and occupational therapists.  It totally wiped him out and he needed a lot of holding after that.  Sarah, Whitney, and Spencer are really happy to see Michael and their mommy and daddy again.  They just want to hang out with us wherever we are.  

Michael will start chemotherapy next Wednesday back at Children's Hospital.  They think he should have sufficiently recovered from his shunt surgery for them to wipe out his immune system.  We're still trying to figure out what kind of quarantine to place him under for the next few months during his chemo treatments.  On the one hand we don't want him getting sick, but on the other hand we want to try to give our kids some semblance of a normal life if we can.

Visits and shunt surgery

Yesterday started out with a skype to the kids back home.  We had a good time, especially when Tim made the kids giggle.  It was fun to share the hospital life with the kids at home.

Every few days, volunteers with dogs specially trained to visit sick kids will stop by.  Here is Mikey with Kayla.  She was so sweet and gentle with him.

Tim and I were pretty homesick for Sarah, Whitney and Spencer so we begged my mom to bring them down after church.  We put Michael in a red wagon and were able to take him out of his room and down to the cafeteria where we had Sunday dinner together with everyone.  Thanks mom for making our day!

We were so excited to see the kids, but I have admit it was so totally real - the kids running around everywhere, crazy and excited to see us and Michael, tummy aches, poopy messes, sassy talk, and a wonderful dinner the kids were happy to have in front of them but not interested in eating.  We totally forgot to take pictures amidst all the chaos.  It was like real parenting with four kids.  We sometimes forget what it's like in the quiet, organized, sibling-free hospital.  Here's one more pic of Tim chilling out with Mikey after the craziness:

Then today came, which was a pretty emotional day for us.  The hospital workers arrived to transport Michael just before 8:00 AM and shunt surgery began at 9:00.  Dr. O'Neill said Michael did well and we were able to see him again around 11:00.  He woke up in a lot of pain and we spent most of the afternoon helping him manage it.  Tonight he has been doing better and has been back to a few smiles and giggles.

Also, on a good note, ever since the opthamologist told us Friday he wasn't sure if Michael's vision would ever return, he's actually had moments where he has been looking and focusing on things better than since the beginning of January.  Yes, as some of you have mentioned, there are pictures even here on the blog where he seems to be looking at the camera, so we have been puzzled by his on-again, off-again focusing issues.  Could it just be a normal baby phase?  Could it be black-out spots that can be common side-effects of hydrocephalus?  Or something worse?  We don't know, but we are grateful for each day he "sees" us.  Thank you again to all of you for your kind words, prayers and thoughtful gestures.  We read all of them and cherish them and re-read them when we need a "lift."

Will we go home tomorrow?  To be continued...