Sunday, December 30, 2007

Boy shaves head to support cancer-stricken cousin

Originally published December 30, 2007 in the Frederick News-Post
Link to Original Article
By Ashley Andyshak
News-Post Staff

Colin Middlebrook, a Frederick first-grader, shaved his head recently in support of his 4-year-old cousin, Henry Scheck of Hagerstown, who has cancer.

Colin Middlebrook got a Baltimore Ravens hat for Christmas.

And he'll be sure to wear it as the weather turns cold, since his hair isn't there to keep him warm.

Colin, a first-grader at Spring Ridge Elementary School, told his barber to take it all off last week in support of his cousin, 4-year-old Henry Scheck of Hagerstown. Henry was diagnosed with brain cancer in October, and he's lost most of his hair in two rounds of chemotherapy.

The haircut was all Colin's idea, his parents said. He'd wanted to shave his head before seeing Henry at Christmas, but John and Lisa Middlebrook said no.

"He kept asking, and I don't know what made me change my mind," said John Middlebrook, Henry's uncle.

Patrons at Gentlemen's Choice II barber shop in Frederick on Thursday said they admired Colin's idea and that his cousin would be proud, and relatives from across the country said the same, John said.

"People all over the place thought he was a pretty big kid to do that," he said. "And Henry's mom and dad thought it was cool."

Henry has seen the pictures of Colin's new 'do, and the cousins might see each other New Year's Day, the Middlebrooks said. However, Henry is getting ready to start a third round of chemotherapy and can't have many visitors.

Colin said a shaved head feels a lot different, but he likes his hair short. He didn't tell any of his friends or teachers about his haircut plans, so many of them will be surprised when he returns to school next week.

"He doesn't think anyone at school will recognize him," John said.

Henry's family has started a blog about his battle with cancer. They're also selling white bracelets, inscribed with "Life is Fragile, Love is Not" as reminders of Henry's challenge.

The $2 donation for each bracelet will benefit Francisco, a boy from Brazil who is sponsored through World Vision, a Christian relief organization. The sale was organized by the Glade United Church of Christ in Walkersville, and more than 200 have been sold so far, according to the site.

Friday, December 28, 2007

Scheck Infirmary

The last couple of days have been relatively care free. We made a trip down to Johns Hopkins on the 26th to have Henry's blood drawn and to clear his catheter which had gotten plugged. It turned out to be uneventful and we were home by dinner time. The results of his blood counts told us that his platelet levels would keep us from starting round 3 until at least New Year's Eve. We've opted to start on Thursday, January 3rd which will give us time to spend with my brother's family visiting from Kansas and my Mom and Dad who are returning Sunday.

Yesterday, we had our own version of the hospital here at the Scheck house. Sophie had strep throat and so had to be quarantined upstairs all day away from Henry. She handled it well, watching TV, making crafts and playing video games. By the end of the day I felt like I'd been to the gym doing the Stairmaster. After 24 hours of medicine she is no longer contagious so she and Henry are playing a lot together already today.


Tonight the girls are visiting a friend overnight and Tara's mom, Jane is taking Henry for a while so Tara and I can have a dinner out. Today will be spent running errands and just being together.

Tuesday, December 25, 2007

Christmas at Home

Despite being sandwiched between hospital days, we had a lovely Christmas Day. The morning was busy with presents and setting up new toys and digging for batteries. Anna, Sophie and Henry all had an abundant Christmas with toys and games from friends and family. We were still reeling from a visit with Santa Claus the night prior.


After some down time in the afternoon we headed over to Uncle John and Aunt Lisa's house for Christmas with Tara's family. Henry got to spend time with his boy cousins and the kids opened additional gifts. The adults visited while nibbling at terrific finger food followed by an equally wonderful turkey dinner. The kids all played video games, ran around outside and raced cars along the floor. Henry had an especially nice time with Cousin Charley.


After dinner we were presented with something we couldn't ever have expected - a amazing portrait of our three children done by an artist friend of the family. We were then told that it was commissioned by dozens of our family and friends around the country. It is at times like this that words fail me. The phrase 'thank you' simply cannot capture the appreciation we have for the obvious love and support this represents.


The portrait was accompanied by Christmas notes and statements of encouragement and love, all of which we've yet to even go through. We're so grateful to each of you who've provided the energy and love to keep us going.

Monday, December 24, 2007

'Twas the Night Before Christmas

So Henry was up early this morning, 4:30am. I guess he's just happy to be home. Since Tara was going to work this morning, I got up with him. We watched TV and he asked for macaroni and cheese.

I went upstairs to shower around 6:45am and asked Tara to feel my pulse. My heart had been pounding in my chest for most of the morning. It turned out that my pulse was irregular and she asked me to follow her into work for an EKG. A quick test revealed that I was in atrial fibrillation. My heart was receiving unusual signals which caused it to beat differently. Tara's doctor friend, Matt Hahn, called in a favor with a local cardiology office in order to keep me out of the hospital at Christmas. After a morning of three EKG's, two doctor's offices and an echo cardiogram (...in a pear tree) I was sent home with orders for an aspirin a day, some blood work and an appointment for a stress test. It seems that atrial fibrillation can be stress induced but that I may have minor irregularities that may have contributed as well. I'll have some additional tests during Henry's next hospital stay.


So now we're ALL finally at home with plenty of reasons to celebrate. We have some much gratitude in our hearts for each of you who continually pour love and support upon us in abundance. Happy Holidays to you and your families. Give extra hugs and kisses to all of the children in your lives. They are precious and cannot be taken for granted. Know we send special holiday wishes to all of you.

Sunday, December 23, 2007

Over the river and through the woods....

ANC 270! Yah!!

Henry and I will be leaving the hospital today to join Bryan and the girls at home. The holiday timing really couldn't be better. Since his counts have recovered, he no longer needs to be sequestered, so we'll get to see our germy snotty cousins (sorry, boys, but you know it's the truth) on Christmas day.

When I changed Henry this morning I noticed a lot of bruising on his knees. The nurse confirmed my suspicions that his platelets are down, to 10 this morning which is the lowest he's been thus far. We'll need a tank-up before we get discharged, but then he should be in good shape for the next few days.

Saturday, December 22, 2007

Not quite...

So we didn't get the news we wanted to this morning. Henry's ANC isn't over 200; at 126, we're figuring we're at least there till tomorrow, though we still plan to request a recheck for later today. He's still feeling great, and being very active.

Keep your fingers crossed that we'll be out soon!

Friday, December 21, 2007

Chasing Henry

Today was a very busy day for our little Henry. He was feeling great and because he was drinking well, he was 'free' from the IV pole. He had to be hooked up only a couple of times for short duration for some antibiotics - but only if the nurse could catch up with us. Henry has learned to exploit any bit of freedom he receives in the hospital and while not afraid to venture out with the pole, without the pole he is downright difficult to keep up with. A welcome change to be sure.

We traveled the entire range of what we know of the hospital today, visiting the library, the lobby, and the oncology floor and spent a large part of our day in the PCRU playroom. He insisted on bringing his new Lightning McQueen suitcase everywhere and between that and his slippers, he generated a load of smiles. We had our run of all the toys and had them spread over the entire floor. We entertained the clowns again and danced to a singing bus. He ate puffy cheetos (cheese puffs) and pretzels, drank apple juice and fruit punch, and chased the nurses. He fell asleep easily at the end of the day and is resting peacefully next to me as I write this.






The nurse will draw blood in the middle of the night, it will be tested and provided the ANC (Absolute Neutrophil Count) is higher than 200 and he has no signs of infection, we're headed home tomorrow. If his ANC isn't quite high enough, we'll have to talk the staff into testing him again a little later versus waiting 24 hours. Either way, its looking good for Christmas. And best of all, he's feeling great.

Thursday, December 20, 2007

Holiday Fever

Yesterday afternoon, after regularly finding a normal temperature for days, Henry registered a fever. A quick call to the Oncologist in Baltimore confirmed what we knew we'd need to do, back to the hospital. Because he was acting normally with no signs of delirium, vomiting or drowsiness, they recommended that we drive directly to the Hopkins Emergency Department.

Two hours later we were pulling into Johns Hopkins ER and spent the remainder of the afternoon and early evening there. We were fortunate enough to receive care from a very caring, former Oncology nurse there who was familiar with our needs as well as the staff that normally cares for Henry. We were transfered to the third floor this time as our normal floor, eight, was full. This floor is called the Pediatric Clinical Research Unit (PCRU). This is reserved for children on protocols that require monitoring and careful documentation, etc. It is comfortable, but unfamiliar, so we'll acclimate over the next 24 hours to a slightly different environment and routine. In the spirit of being thankful for small things, the adult bed is more comfortable, albeit smaller.

This floor also has given me yet another perspective on hope. A quote is right outside our room:
Courage is not the absence of fear, but rather the judgment that something else is more important than fear.
- Ambrose Redmoon

So we had an OK night. Henry slept well once asleep but woke early to a painful tummy ache. After several bowel movements over the course of an hour, he told me "my tummy feels much better". We talked to Grandma Linda and Mommy on the phone, ate some breakfast and we're now watching what seems to be his new favorite movie, "Firehouse Dog". Which I'd recommend to anyone with young boys. Firetrucks and dogs in the same movie? Come on, that just can't really be beat.

I find my mood in the hospital to be improved. I guess in some way I feel like we're doing something. The onus of attending to a potential fever and the anxiety of it descending at any time has passed for now. The best part now is actually that his temperature has come down again, again, so different than the last time. I checked with the nurse and his counts seem to be bouncing back already now too. We may actually be able to be home on Christmas after all.



Finally - Henry is in a good mood and has enjoyed talking on the phone. If you'd like to call please do so between 10am and 6pm EST. Henry likes answering but he takes a minute, so be patient. Also, if its a bad time please don't take offense as we'll either not answer or let you know to try later. Our number for room 316 is 410.502.4127.

Wednesday, December 19, 2007

Being Human

Monday's clinic visit went without incident. Our appointment wasn't until 2:00p but we've come to realize they will bring us back almost immediately upon our arrival, so we came a bit early with hopes of leaving before 5pm. They draw blood and do vital signs (blood pressure, temperature, weight, height) to which Henry is finally becoming accustomed. The meeting with the Oncologist defined a couple of dates for our next cycle. The MRI has been finally scheduled, but not as early as expected. The MRI will be on Friday, January 11. Additionally, as Henry is doing quite well, they expect to admit us to the hospital again the day after Christmas.

Henry's counts from his blood came back and were fine with the exception of his platelets. He received a transfusion which took about 30 minutes. We had to wait for a little over 2 hours for the platelets to come though. We decided that Henry needed to learn to complain like in a restaurant - "Hey, I ordered platelets over an hour ago, what gives? There'll be no tip for that nurse..." Really though we all handled it with patience, especially Henry.

He began coughing a little upon finishing the transfusion and there was a bit of worry regarding a reaction, but the critical time passed without further symptoms and we were released about 6:15pm.

Yesterday we spent at home. I feel like I spend most of the day in a daze. I still can't figure out if its being tired or what. I feel a little more on top of things today. As I was running yesterday I thought more about hope and fear. I realized that there's no way not to be afraid right now. Then it occurred to me that perhaps I don't really have to choose between hope or fear. Part of being present here and now is being open enough to allow it all to be part of me. Being anxious or calm, afraid or hopeful, angry or peaceful, selfish or caring is all part of being human. So is being open to what today, or tomorrow for that matter, has to offer and accepting it, whether we like it or not.

Monday, December 17, 2007

Hope's Accomplice

There is a distinctly different sound when the shower water hits a shaved head rather than one with hair. I took notice of it for the first time this morning - it sounds like muted static.

I've spent the last few days trying to sort out my feelings. Why do I feel so dour even when things are going well? I found it easier to laugh when we had small breaks during really difficult times, than to be constantly reminded of our reality during easy times. It's almost as if there's time to be sad. Anyway, the neutral static was welcome.

These last few days have been really good for Henry. He's played and been happy. He's begun to take his medicines easily so really there are no struggles right now for him. I've noticed though a tightening around my heart though that will not leave me. I've tried my normal mood elevators - running, resting, a good soccer game on TV, a good nights sleep. There's a level of unease that is omnipresent. Its begun to make me irritable. I've had greater difficulty sleeping. It will not leave me.

Henry's MRI is pending just before New Year's. This will tell us how the chemotherapy is working so far. If the cancer is responding, then we commence with the high-dose chemotherapy. While we're not looking forward to it, the alternative is unthinkable.

I've been reticent to hope. Not because I have a pessimistic outlook on things, but because to hope is to not be present here and now. To hope is to be looking to the future of what might be, instead of what is. Implicit in hope is the aversion to the negative outcome as you wish for the positive one. Hope's accomplice is fear.

Saturday, December 15, 2007

A Spoonful of Sugar

After two days of struggling with Henry to take his medicines, he's begun to take them like he wants them. We've been obliged to hold him down and coax the medicine into his mouth by holding his nose and sometimes double dosing with as much as ended up on our clothes or the floor. This usually took two adults and involved 10 minutes of screaming. The really good news is that this is the hardest part of the last couple of days. He's been energetic and in a great mood. We've been enjoying the weekend around the house, venturing out into the holiday craziness only in spurts. For now we're content to rest for another home day free of medicinal battles.

Thursday, December 13, 2007

Quick and Easy

How different this cycle of chemotherapy has been for Henry. I recall how difficult the first trip to the Outpatient Oncology Clinic was. He threw up at the side of the road due to nausea - now he ate snacks all the way home. We had a bag full of medicines the first time - this time there were no medicines on board. The first time he lay in a hospital bed while I applied lotion to a horrible rash - this time he played with other kids in the playroom during his blood transfusion and rode the IV pole to the bathroom. The last time he cried all day asking when we were going home - this time at the end of the day he said, "that was quick and easy!"

So while his counts are dropping, he's energetic and happy. He's going to the bathroom without anything but a small bit of preventive laxative, but no other medicines. OK - so he's got a new antibiotic today, but small potatoes (he's got a bit of an infection from his catheter). We still have to do G-CSF in the evenings, but that's all of 20 minutes. This time has definitely been less stressful. We now have three days at home and back to clinic on Monday. We're leery of a possible fever from infection, but we're cautiously hoping for smooth sailing through Christmas.

Tuesday, December 11, 2007

Release

One of the realities of the hospital is that nothing happens on time. We did however make it home tonight, albeit late. We arrived home around 8:30pm. We'd spent the afternoon playing and racing with new friends through halls of the Oncology floor. We met a 5 year old boy with aplastic anemia awaiting a bone marrow transplant and a 3 year old little boy with acute lymphocytic leukemia. Perhaps we'll run into them again at future visits. Henry had great fun racing in the halls and arrived home in similar spirits. He played with his sisters for a few moments before bed and all were happy.

Tomorrow is Sophie's birthday. We're thankful to be home to spend that special day together. Thankful too that Henry is in a good mood, eating and drinking and generally happy. His blood counts will continue to drop over the coming week to 10 days while we carefully watch for a fever. This will likely take its toll on his energy level, but he's surprised us about so many things this cycle.

Our next clinic visit will be Thursday to check his blood counts and give him a blood transfusion to help him get through the weekend. Tara and I are just so pleased that he is acting so normally now we're beside ourselves. Our stress levels are directly related to his mood and how he's feeling. Tomorrow we'll also begin the G-CSF again to stimulate blood cell growth. He's still on nausea and constipation medications and seemingly the right doses. We didn't have one vomiting spell in the hospital at all!

Still Sleeping

We should be going home today as planned. After speaking with the Oncologist, we decided last night to 'refuse' the steroid Henry has been on in favor of sleep over nausea control. It seemed a good gamble and has paid off. Its 7:30 am and he's been down since 11pm last night. His last drug is finishing, Cisplatin. He then has 8 hours of fluid to clear that out.

Better rest was good for everyone. Last night as he was winding down, he said, "Daddy, I was thinking about griving my cruck." He's definitely looking forward to going home. This cycle was so much easier than the first. The worst thing for Henry was taking his oral constipation medicine. The worst thing for Tara and I was the lack of sleep and the mood that ensued. So all and all a 'good' chemotherapy cycle - so far. We'll hope for no fever and smooth sailing until after Christmas. It will be nice to all be at home for Sophie's birthday tomorrow too.

Yesterday as I was waiting out the bandage change in the parent's lounge (it was my turn to play the 'can you handle this one?' card) a woman was telling me her story of their recent admittance to the hospital of her grand daughter with acute leukemia. I've become pretty good at listening to these stories without getting too worked up. There are just so many of them. This time though, the similarities were enough that her story gave me vivid reminders of some of the whirlwind that we'd been through initially. It was tough to see them and know of their heartbreak at this moment and it grounded me in our reality again. It's amazing what we can acclimate to.

One thing hanging over our heads right now will be the head and spine MRI which we presume will be done just before the third cycle begins to determine the effectiveness of the treatments to date. While we're not looking forward to the high-dose chemotherapy (cycles 4-6), as its very hard on the children who receive it, it is a necessary treatment if we want the best chance of long-term survival. The MRI will determine if the current chemotherapy is making sufficient headway to proceed.

For now, we'll pack up our stuff in the hospital and play the waiting game which is discharge. That's a game definitely worth playing!

Monday, December 10, 2007

Homeward bound...

Good news today! We're being discharged tomorrow, probably late afternoon. It's a day earlier than we expected, so we're very excited.

Henry has done so much better this cycle. Granted, we're not the ones experiencing the chemotherapy, but by looking at his general level of discomfort, this week has been so much better than the first round.

We expect him to continue to feel poorly for the next several days, but feel more confident about our ability to recognize things that can help him feel better. Most importantly, if he's not eating we can restart his TPN (IV nutrition).

We're keeping our fingers crossed that it will be a quiet couple of weeks and we can avoid another hospitalization until chemo round 3 begins.

Sunday, December 9, 2007

Love 'em and hate em

Steroids.

We have a love-hate relationship.

Henry gets them to help with the nausea side effects of his chemo. And where last cycle he didn't eat at all on Day A (which was today), today he nibbled a bit, until dinner. Then he ate like I haven't seen him eat since the last time he was on steroids (directly after his surgery). He downed at least a cup of spaghetti with sauce, and ate a bit of ice cream after. He's already asking for more spaghetti for breakfast, this time with a side of pizza.

Steroids really boost the appetite.

They also jack you up, which was why he didn't sleep for Bryan last night (note my optimism, I haven't yet conceded tonight). And probably why he was so irrational today. It was like having a particularly angry two year old. Every 2 minutes he found something to argue over, and argue he did. Then he screamed. Then he hit and kicked. And it pretty much lasted the two minutes till there was something new to be ticked about.

So I'm glad the steroids are working.

But wow, the steroids are working.

...and Going and Going and ....

It's 2:30 in the morning and I have been looking for the location of Henry's OFF switch or his battery compartment without any luck. I'm not sure where his stamina is coming from. He's acting like he just woke up. He's asking to eat and to play. He requests my attention frequently and engages the nurses in playful conversation. He's not unpleasant but he's not sleepy either. I wish I had this kind of endurance in college. It would have come in handy for test preparation...

After another very active day, last evening (as in 4 hours ago) Henry began his Etoposide and Cyclophosphamide. These each take approximately one hour to administer followed by the nurse flushing the IV. He is now receiving his Mesna, chemical to counter the effects of Cyclophosphomide which can cause bladder inflammation and lead to hemorrhaging.

Well - believe it or not, as I'm writing this he's quiet and now sleeping. I had tried from about 8-10 to put him to sleep and then gave up. He's been up and active since then. Perhaps I should have written earlier!?

Saturday, December 8, 2007

Toxicity

Henry had a great day yesterday. We played endlessly with a dollhouse that included a mailbox and a mailman. Henry cut up paper into millions of microscopic pieces that we "mailed" to the various dolls around. It really occupied him, and as long as he was keeping the scissors far from his IV lines I was able to relax too. Don't think I didn't imagine how I'd have to explain that one to the nurse.

We had a small issue with his Hickman catheter (central line into his chest) migrating out a little bit. A chest Xray showed that placement was still good, and it sounds like it's not a big deal, just another thing to watch.

Most importantly, we are monitoring closely for Utz Honey BBQ potato chip toxicity, due to the fact that Henry ate 5 full bags yesterday. For those counting, each bag is 230 calories, so between the chips and the drinks he took in, I'm guessing we hit 1400 calories yesterday. I was thrilled. He's already downed a bag and a half today.

hhhhhhhhhHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

The above line is Henry's contribution to the post today. He's found the H button on the keyboard.

His methotrexate level has dropped low enough to begin the second half of chemo. I anticipate he'll begin feeling poorly once it starts if it mirrors our first cycle. Hopefully, the lows won't be as low. I think a lot of his misery the first time around was anxiety at being in the hospital and all of the stresses associated with that. He's taking all of that in stride this trip.

Bryan is on his way down this morning to stay for the night. Henry is excited to show him the train that is being set up in the lobby - I think we'll be making many trips to go see it.

Friday, December 7, 2007

From the Mouths of Babes

Spontaneously this morning, Henry said, "Yesterday at the soccer field, I fell over and couldn't stand up." 'Yesterday' and 'Tomorrow' are his 3-year old synonyms for past and future times. I was curious to see what he remembered and asked him what Mommy and Daddy did then.

"You took me to the doctor," came the reply.

Then what?

"I don't know."

I decided that this was an opportunity to explain a bit about his cancer. I told him that there was a ball in his head the doctors had to take out and then he could walk again.

"How big was it?"

I formed my thumb and index finger into a quarter sized circle. I told him that some of the ball came off and went to his head and back and that is why we were giving him medicine that 'eats' the pieces of the ball.

"How does the medicine eat the pieces?"

I told him that I didn't really know, but the doctors were taking care of it and that the medicine kept the pieces from getting bigger and took them out of him in his pee. (OK - so maybe not a perfect analogy...) He replied, "and the food makes me poop." That got a smile out of me.

"How does the ball make me not walk?"

Wow. I felt like we were verging on Biology 101 now. I picked up one of his nearby stuffed animals, told him where his brain was , that it helped him do all sorts of things like talk and eat, and told him the ball was pushing on the part that helps him walk.

"Can I watch Curious George now?"

Got it. That must have been enough. I just love his mental acuity. If he holds to form, I imagine this conversation will resurface more than once and will be completely intact. He just needs some time to process.

Thursday, December 6, 2007

Winter Wonderland

While the kids at home played in the snow, Henry and I (Tara here) had a great day here in the hospital.

To start with, the Child Life department at the hospital hosted a make-your-own gingerbread house. Each kid got their own fixin's, in the (maskless) comfort of our rooms, but we watched on the inhouse hospital channel how to do it in real time. It's a neat system, you can call them up on the phone and ask questions or give ideas...it's like a virtual, germ-free playgroup. Anyway, we did pretty well, as you can tell by the pictures. Henry took great delight in my sticky icing fingers.



We also got a visit from Dr. Boots and Dr. Spats, who run the CCU here at Hopkins - that's the Clown Care Unit. Henry took great delight in hiding under his blanket before they came in, and as highly trained professionals, they ran with it. They had him laughing out loud, and we hope to see them again soon.

We also took several trips around the hospital. Henry really enjoys getting off the floor, and as long as he keeps his mask on we have been allowed to travel away. We hit 2 restaurants and the coffee shop, as well as watching the constructions workers search for things under the light cover of snow.

All in all, it's been a great day. His spirits are good, he's accepting of being here, and he seems to be making the most of a less than ideal situation.

Let it snow.

Snow Day

Henry's second round of chemotherapy medicines began yesterday. We started again with Methotrexate and Vincristine. The doctors have decided to administer only half of the Vincristine this time due to the constipation complications that Henry endured last cycle. We've been assured that this will not compromise his outcome. These drugs work in tandem with one another and the doses are based only on weight and height so some individual tweaking is expected.

Henry and Tara slept well last night which was a relief to everyone. Anna and Sophie do not have school today and are currently out helping our generous neighborhood children in clearing the driveway of the cause. I suspect some hot chocolate and indoor playtime will be in order later to warm them up.


I'm enjoying a quiet day of cleanup, laundry and organizing holiday details. Its nice to be busy with those things but I find myself easily distracted and daydreaming a bit - just phasing out and kind of forgetting what I'm supposed to be doing. There is a rhythm in the hospital. There are things that need to be tended to and now without those immediate demands, its so easy to become lost in thoughts.

Later today we plan on taking a trip to Baltimore to visit Henry. I had the girls wear masks for a while today to make sure that they can tolerate it if need be. Sophie is coughing a lot so I'm thinking they'll be a needed precaution. We'll decorate Henry's room and just let them be together for a while. It will be good for them to see where he is and meet some of the people that help to take care of their brother.

Wednesday, December 5, 2007

No Greater Love

Henry's pheresis yesterday went as planned. The procedure of removing and separating his stem cells began early with the placement of a special line in his groin area. For this a special team of two nurses spent an attentive day at a large machine which withdrew his blood, separated it, then replaced it, warmed, into his body. He was under heavy sedation all day which also meant he was on a ventilator throughout. This was to ensure that he did not move during the procedure as it would hamper the results.

I spent my day mostly with logistics - moving our stuff from the car, checking out of The Children's House, moving the car - and with some catch up sleep, which while not completely restful in the chairs in the P-ICU (Pediatric Intensive Care Unit) was better than nothing and got me through the day. I also visited with some of the other families there and got a rare window into their lives.

One woman's daughter was recovering from toxic shock. Another family from North Carolina was in for their daughter's 18th surgery for brittle bone disease. A two-year-old little Chinese boy next to us was awaiting surgery for a heart defect which prevents his blood from oxygenating his lungs sufficiently. His adoptive mother had just brought him back from China less than a week ago. He'd been abandoned due to his condition and had been in an orphanage since very early. His new family had adopted him fully aware of his condition and has likely saved his life in doing so. This was their 3rd special needs adoption.

The different conditions we've learned about and had exposure to, including our own, have been random diseases, handed to us by fate. Families are forced to adjust their 'normal' to accommodate their new realities. For them, and us, there is no alternative. The family of the Chinese boy had chosen their situation, deliberately, with full knowledge. I spoke to the mother at some length and they see their choices as their normal and simply what they are supposed to do. To me, I see a nobility and self-sacrifice that I'm humbled by. It makes me feel honored to have met them, I hope for the best for the little boy's surgery, and am especially reverent of the capacity of human love.

Because Henry is here a bit early for his next round of chemotherapy, he has no medicine attached and his counts are good. We're free to move around the hospital with relative ease. This morning, instead of the wagon, he chose a small car with a push handle for me navigate. We went all over the hospital. He honked and waved at the nurses and shop owners. We put his purchased snacks in his 'trunk' and giggled when I purposely crashed into things or chased after the nurses.



He's already asking to go home. I told him that we have to stay for a long time again. He asked, "Will friends visit me?" - a call to his Grandmothers to come again. He's becoming very accepting in some ways, defiant in others. I like to see the fight in him, but some acceptance is good too.

Monday, December 3, 2007

A Good Day

Henry and I dawdled today. We took our time getting ready to leave the house and we made our way into Baltimore with no particular time frame in mind. I took pleasure in watching the fall leaves being blown furiously around by the wind and the sometimes-gray, sometimes-sunny sky that resulted from the gusts.

We checked into the Children's House and picked up passes to the Aquarium and once we arrived in the Harbor, ate lunch and then proceeded on our own version of 'Finding Nemo'. On the way we saw the Dolphin show and caught a shortened version of the 'Polar Express' with special effects. I made sure we detoured to catch sight of a shark and a stingray and then finally found the anemones where both Nemo and Dory live. Mission accomplished - he was ready to go. Really, what more was there for a 3-year old?

We had the tactical business of having to stop by the clinic for a blood draw and of running his last dose of GCSF before bed, but these were trivia. We returned after our clinic visit to a meal of pizza and salad, once again a gift from the Children's House. Henry explored the basement full of toys for a while and then setteled down for a movie, for which he lasted all of 20 minutes. He was asleep on my chest.

It was a good day.

Hair Fairy

When the kids lose their teeth the tooth fairy comes, but who comes when your kid loses his hair? Well, before round 2, we decided to summon the Hair Fairy. Henry awoke to a new book and two dollars, which was mostly for something to put in his new Lightning McQueen wallet. The book was 'Clifford's Day with Dad'. Seemed fitting that we're headed to the Aquarium for a day together. That Hair Fairy sure is something.

Sunday, December 2, 2007

Calm Before the Storm


Today was a gift. I'm starting to feel like that more and more. Today, though, despite being a little worn down from yesterday, we all relaxed more than we have in a long time. We had more visitors today, some from out of town with words of consolation, others from close by with company, distraction and food. A fire burned in the fireplace while we allowed the kids a few early Christmas gifts as we're not sure what the official holiday will bring. I've become fond of candles over the last year and lit several around the living room. There was a warm glow over the entire day.

Tomorrow I'm taking Henry to Baltimore. We're going early to visit the National Aquarium. The girls visited recently and enjoyed it. I figured it was the least we could do for Henry before subjecting him to round two of chemotherapy. He's looking forward to seeing all the sharks, stingrays, and dolphins. We visit the clinic sometime before 5pm to have them type his blood for Tuesday's surgery and stem cell harvest. Then we're off to spend the night in the Children's House again. What a wonderful resource that has become for us.

So tonight we take stock of our blessings and steel ourselves for the next round. It helps a bit knowing that we can hope to expect some good days after the bad, but it doesn't really soften the blow of what's to come. Here we go again...

Saturday, December 1, 2007

Hooked

True to his current trajectory, Henry had his best day at the hospital yet yesterday. The most difficult part was getting his weight. It was the first thing that had us do and he was just not going to take his coat off. After that though, he played in the playroom they have at the Oncology clinic while he received his dose of G-CSF. We've given this to him before, but it was only over the course of 20 minutes. Now they believe that a longer exposure over 2 hours will have greater efficacy. So we sat and watched Dora and he pretended to talk on the phone to Mommy and his sisters. Altogether a very easy, gentle day for all involved. In fact, something I never thought would happen, Henry waved and smiled at the Oncologist and nurse today. He continues to surprise us with his adaptation to the extremes of his situation.

This morning the home nurse came to instruct us on how to administer the G-CSF at home. Its clear why the home nursing is an industry. The room stays are by far, the majority of the cost when we see the itemizations from the hospital and insurance company. Despite the thousands of dollars of equipment they lend us and the nursing visits, it is clearly more cost effective - not to mention more comfortable and humane. Henry calls this time "being 'hooked'", like 'hooked' to his 'tubes'. He seems to prefer sitting when he's hooked, but today he was more mobile. We put his medicine pump in a dog backpack that was given him recently to hide it and make it more portable. We only hide it to keep him from having to remember what's going on. He doesn't really seem bothered by it all that much. He played on the floor for a while with a toy bus and a play kitchen mixer; he walks to the bathroom with some help and also aided Mommy in wrapping presents.

I'm not sure if its easier or harder awaiting chemotherapy this time. To a large degree we know what to expect. Repeating what we've done isn't pleasant to consider, but I suppose its slightly better than not knowing. Looming large is the end of this cycle at which we will have an MRI of Henry's brain and spine to see how receptive the cancer has been to the therapy thus far. There are obviously gradients of the answer to be found from that test. The prognosis can change significantly based on that outcome.

Later today, Tara is going for lunch with the women in her family - a long-standing tradition. I will take the girls late this afternoon to a soccer game in, of all places, Baltimore. This should constitute some enjoyable time to spend relaxing with them and some friends for both Tara and I today.

Friday, November 30, 2007

Nice Day for a Walk

There are a lot of reasons I write in this blog. One of them is to remember. This morning, Henry looked up at me and said, "I thought it would be nice to take a walk. I can drive Cruckie and you can walk." Its cold, but sunny and we will be going on a walk before our drive in to Baltimore today.

Thursday, November 29, 2007

Anticipation

Today we exhaled and began mentally preparing ourselves for the next stint of chemotherapy. It was a generally relaxing day composed of our now typical activities - a few errands, a Cruckie ride or two (or more), playing with some neighbor friends and some nice time with visitors. Henry was in a pretty good mood today with one exceptional outburst while outside riding Cruckie. I'm still not sure what set him off, but he cried with his head down for what seemed like many minutes. He wouldn't let me approach him and I, of course, didn't feel right walking away. I sat on his truck's hood and waited it out.

I hoped that I was assigning more to his emotions than was plausible, but I imagined some of the same thoughts as I was having, going through his little head. A nondescript feeling of dread, of the feeling that while this was all well and good, it was becoming more difficult to enjoy the closer our re-submersion into the throes of chemotherapy came. It was over as quick as it came and he was happily driving down the street, a blessedly short memory.

Henry loves trucks. He likes the mail truck, the garbage truck, backhoes, bulldozers, tractors of all shapes and sizes, firetrucks, monster trucks and UPS trucks, which he now calls the 'present truck'. Today a package came for Tara and me. I halfway expected this to be a problem for him, but he instead insisted on smashing the little popcorn packaging material in it. True to three-year-old form this 'popcorn' kept him busy at least as long as any toy he's received. Just like at Christmas, the wrapping paper is more entertaining than the gift itself...

Tomorrow we're back at Hopkins for a checkup. They'll draw his blood to make sure his system is where it needs to be for stem cell harvesting and re-entry for chemotherapy. I'm hoping this will be a relatively short visit. I'll have to make use of the time to inquire about some insurance discrepancies, additional supplies that we require and some general questions about what's to come. Over the next four days, we'll administer double doses of G-CSF, the stem cell stimulating drug that will send his cells into overproduction for harvesting. These cells will be saved for the high-dose phase of chemotherapy. Monday evening we'll be at the Children's House again as we expect an early time for a surgery in which he'll have an additional line put in for the express purpose of the stem cell harvesting. He'll be sedated all day in the Pediatric Intensive Care Unit. The line should then be removed at the end of the day and then I suspect we'll be moved to the Oncology Floor. We're grateful for at least having the weekend to be at home as a family again before beginning Cycle 2.

Wednesday, November 28, 2007

Boys Will Be Boys

Yesterday Tara started work again. This was my first day entirely alone with Henry. Since Henry's immune system is recovering very well now and he's feeling better, he's able to be outside more and play with friends. One of the neighborhood boys came down and Henry and he played with Cruckie. My girls never did anything like this...


Today Henry woke up a little grumpy but turned around quickly. After his sisters left for school, he watched his morning regimen of 'Franklin', 'Oswald', and 'Dora the Explorer'. Then we finger painted for a while.


While the paper was a popular choice, so were our noses.



We took off about 10am for McDonald's for a hashbrown - filled with fatty calories, just the prescription for gaining back some pounds. Unfortunately Daddy is also putting on some sympathy weight...those things are so good. We went over to Border's to get a few more books for some hospital reading. It's no big surprise, but his current favorites mimic some of the TV shows he watches - 'Clifford' and 'Max & Ruby'. We'd seen the mail truck passing us on the way out for errands and he was eager to get back to drive Cruckie up to the mailbox for retrieval. He pulled up close - a little too close, actually. Sorry about the plants Mommy...

He loads up the back of Cruckie with mail and then tears off around our circle while I 'chase' him. He cackles the entire time. He'll round on me and try to run over me and still, he just laughs like its the funniest thing in the world. I warmed up a bowl of soup and sat outside and watched him awhile. He'll go round and around in circles that would make any adult dizzy.

Another marker of his interim recovery right now is that he asked for a snack that was an old favorite - gummy snacks, peanuts and raisins. This used to be all he'd eat, and in fact became synonymous with the word 'snack', but we haven't heard a request for it for months. So he rode around with his snack in Cruckie for about 10 more minutes and then pulled into his regular parking space in the street which, by the way, he pulls into with a precision unmatched by most mature drivers I know. He sat with a frown on his face and I approached him. "What's wrong buddy?" I asked. "My tummy hurts," came the response. So we came inside. This phrase has come to mean so many things. It's rarely hunger. It was born of nausea and constipation, but now seems to indicate that he recalls his central line and that, I'm sure, begets further thoughts of the hospital and his stay there.

He's now having a bit of well-earned relaxation in front of the television and then we'll be off for a nap that he likely won't take. I've got some running around to do and Granya has stopped by to give me a little time to get out. A welcome respite, but one filled with a bit of anxiety as we've both - Henry and me - become accustomed to being around one another all the time.

Tuesday, November 27, 2007

Christmas Preparation

Yesterday we decided that we should get the house ready for the holiday season. Usually this entails dressing in our snow gear and boots and heading out to a tree farm. This year, since we cannot have any plant material in the house during Henry's neutropenic times, we headed to Target instead. We walked away with a 7 1/2 foot fake tree which had to be de-coned for us to use. Within a few hours we had our house looking like Christmas.
Henry Santa
We had guests from Granya's church come in the afternoon to keep us company. In the evening Tara's sister and her family joined us for dinner and visiting. Henry enjoyed playing with his cousin Charley. It was a happy normal day.

After everyone left for the night, it was Henry's bedtime. We prepared his nutrition and read books. Perhaps because of the evening's activities or a late nap, he did not fall so quickly to sleep as previous nights. He likes company as he falls asleep now and we're happy to oblige, but this night, I fell asleep first. I awoke and he was out. I stumbled downstairs for a bit of TV before bed.

I had a hard time falling asleep when it came time for bed. The busyness and ease of the day had its repercussions in the quiet of those moments before sleep. Our situation becomes easier to ignore during a hectic day, but its weight bears down heavily in the stillness at night.
I need so
To stay in your arms, see you smile, hold you close
And It weighs on me
As heavy as stone and a bone chilling cold...
I was just wondering if you'd come along
Tell me you will
-Dave Matthews Band

Saturday, November 24, 2007

Amplitudes


Tara and I went to bed about 10:30p last evening after starting Henry's TPN (internal nutrient feeding) and woke up about 7:30a. That was the first time since two weeks pre-diagnosis that we've slept uninterrupted all night. This was to be a harbinger of the day to come. Henry was happy and pleasant and seemingly pain-free for almost the entire day. He ate cheetos for breakfast, pretzels and cookies for snack and several small servings of mac and cheese over the course of the day. We cautiously went shopping for some more comfortable clothes for the hospital and when we got home, he played on the floor with his trucks and cars. Best of all - he laughed. He laughed and he giggled and joked around.



Bath time and medicine time are still very difficult. These times seem to remind him that all is not normal. Medicine that he took easily before this last stint in the hospital is now a four-handed operation - and sometime two legs. Fortunately, we have only one medicine to give twice a day - and only through tomorrow. Bath time tonight was especially tough. It seems that whenever he is reminded of the tubes in his chest he says 'my belly hurts'. To me this is clearly his form of denial. We had to put a special water tight bandage on over his central line to keep it from getting wet. It didn't really work that well and to boot it created another crying spell.

We prepared his TPN for tonight and put him to bed. Reviewing the day in my head, I realized that the normal day allowed me to forget about Henry's cancer for a time. I too had my own forms of denial. When presented with his fighting and rejection I reacted poorly. I was angered by his spitting his medicines and fighting bath. Couldn't we have just one normal day? Of course its not his fault. I felt awfully for becoming angry. I'm glad Tara was there as I was able to vent far from Henry.

I feel in a way that we must allow these oscillations of emotion for ourselves and to lean on each other for breaks. This just caught me off guard today. I don't want to waste my time with him being upset or angry.

Here's to you, Mastercard

1/2 gallon whole milk: $1.79
Organic bran flakes with raisins: $4.29
1 bag Cheetos: $2.89
1 can mandarin oranges: $1.29
1/2 gallon pulp-free Orange juice: $3.29
1 pound flour: $0.99

Watching Henry eat 4 bites of pancakes, 15 cheetos, 2 bites of raisin bran with milk, 5 mandarin orange slices, and 8 oz of orange juice in a 24 hour period:

Priceless.

Friday, November 23, 2007

Restful Day

Henry rested well last night. Since he's been home he's complained only a bit about his belly - we're not sure if he's hungry or hurting. Nothing sounds good to him to eat although he's sampled several things which we take as a good sign; a few bites of pancake, oranges, and an icy pop.

Tara's mother is here today cooking up a Thanksgiving dinner with all the fixin's. She's seeing to it that we don't go without turkey this year. We had a fire in the fireplace and did puzzles, a craft and of course, bundled up and rode 'Cruckie'.

Its a strange sensation being home now, nerve wracking in a way. In the hospital, there are all the resources you could possibly need. He gets most of his medicines intravenously there. At home, we're at the mercy of the medicine delivery and the home nurse, which are running late today. We have access to all the hospital phone numbers and such, but after the fever episode, it is unsettling being at home alone.

We've been so busy running back and forth and trying to keep him comfortable that today, with three adults and only Henry here, I'm a feeling some nervous energy. I hesitate getting into anything for fear of not paying close enough attention to Henry.

These fears are, I tell myself, normal. As the day draws on I feel myself relaxing a bit more. Which apparently we'll have time to do more of soon, as well as a bit of time to catch up on some household details gone unattended. The oncologist told us today that we won't have to be back at the hospital or the clinic until Friday next week. That's the longest time at home we'll have had since the day of Henry's diagnosis. I think they're still 'treating' us, understanding that recovery, both mental and physical, for all involved is necessary.

Our next step will be for Henry to have another central line put in for the singular purpose of harvesting his stem cells. He'll take four days of high-dose G-CSF in order to spur his cell growth. Then he'll be put under for duration of the actual procedure, approximately 8 hours long. Following this we expect to be admitted for our second round of chemotherapy. We're trying to catch our breath while we can.

Thursday, November 22, 2007

Thanksgiving blessings

The best Thanksgiving news of all: we're being discharged today! We will likely not make it home till evening, and we plan on a full turkey dinner tomorrow.

We will (hopefully) be home for a week before returning for chemo round 2.

Our love and thanks to all of you, our friends and family, for the love, messages, support, and prayers that are being sent to our family.

Enjoy your turkey, eat your pumpkin pie, and hug your family. Have a happy Thanksgiving!!

Wednesday, November 21, 2007

Paparazzi

One of Henry's newly discovered distractions is my camera. He's very interested in all things mechanical. Often when we're driving the car, he'll ask detailed questions about 'what button' we're pushing or how we make the car slow down. So the camera was no different. We've already had to charge the battery once and as we speak I'm downloading approximately 200 pictures of his taking. He specifically tried to get pictures of the TV, the wall, the ceiling and the IV pole. He also had his stint trying to photograph people, Tara and I were his main targets, but the nurse didn't escape either. I was the subject of one series which, when looked at continuously on the camera screen, appeared as a poor quality movie they were so quickly taken. My son the paparazzi.

First some pictures of Henry:



Here are a few of his selections:


His Favorite Blankie from Grandma.


Mommy and Daddy


Nurse Courtney


Self Portrait

Priceless

Its morning and there's no sign of any poop yet. He rested well enough. There was a bit of puffiness along the lower portion of his head incision I noticed last evening. The floor resident was uncertain of the cause, so she had the neurosurgeon team notified. I was impressed with their response. One of them came down within an hour. Dr. Jallo, the surgeon who performed the operation came in the morning after his reconnaissance team visited. The consensus is that it is an 'inflammatory response', a result of his resurgent white blood cells, which, by the way, are shooting through the roof now. Our last reading was 1280. They're confirming the reading from this morning now, but the preliminary read was 4000. Gotta love the immune system. This trajectory is apparently due to one of his daily medicines, G-CSF, which stimulates their growth.

We're facing another unexpected issue now. His constipation is keeping us in the hospital beyond when they'd normally send us home. His fever has broken, hopefully for good this cycle. His counts are returning in force, which is a requisite for, you guessed it, second round of chemotherapy and back in the hospital. Hopefully we'll get a day at home, but they also need to harvest some of his stem cells for what is called a autologous stem cell transplant. They will take his stem cells that generate marrow and give them back to him during his high-dose chemotherapy - cycles four through six. I believe this is an outpatient procedure but is anticipated before our second cycle of chemotherapy. We don't have a very big window in which to accomplish it though.

The nurse was doing his repeat blood draw this morning to confirm his counts and he asked for a musical snow globe his grandmother brought in. This is one of those things that before I used to look at and wonder how long before he'd get bored of it and then I could 'retire' it. When I see him play with it now, I see it completely differently. I see his eyes light up and his brain trying to figure out what's going on to make it work and just the smile it brings to his face. I don't really care if that lasts 10 seconds, 10 days or 10 weeks. If it brings a smile now, its priceless.

Tuesday, November 20, 2007

Waiting for Poop

Over last 72 hours our focus has been two things. First, Henry's ability to fight the infection he currently has. His fever seems to have subsided, corresponding with the increasing trajectory of his white blood cell count, now at 1280 per cubic millimeter. The 'normal' range is between 6,000 and 17,000. This is the most encouraging news we've had since this visit began. We will continue to monitor these numbers throughout his chemotherapy.

Our focus now is on his Vincristine-induced constipation. A couple of days of constipation is bad enough. Henry hasn't gone for almost 2 weeks. Now that his fever has come down they're willing to try more aggressive measures. To date he's only been taking things from 'above'. I'm writing this during the 6 hour intermission between enema #1 and #2. Each enema requires 3 nurses and myself to hold him down. Afterwards Henry was completely exhausted from struggling, straining and screaming. He rested well for a bit, but we're still waiting for the dam to break, so to speak. If #2 doesn't accomplish its goal, we will continue with more drastic measures tomorrow - manual disimpaction. I'm hoping for a productive night.

Monday, November 19, 2007

Reminders

It's 4:30am. Henry's been up and down all night with stomach pain. He's been irrationally insisting on a wagon ride for the last 10 minutes. The nurse came in to draw some blood. I decided I needed a break - and some food. I sat down on the couch in the parents lounge while I waited for some leftovers to reheat. 'This is the most uncomfortable couch I have ever sat on', I think.

We're surrounded here by reminders of just how serious this whole business is. Monitors, nurses, medicines - these become routine. But when you see a child on a wheelchair going to the elevator for a test or kids playing in the playroom with their masks on, or the black and white pictures of hairless children on the walls, or the buzzing in the halls that indicates a child's oxygen isn't what it should be, or wondering how many kids have been in the same bed that yours is, the screams of the kids getting treatments like NG tubes or spinal taps or some other torture - all of these things remind you of the seriousness of childhood cancer.

I glance up to a sign next to the uncomfortable couch.

Furniture donated
in Memory of
Vincent
and All of the Beautiful
Brave Children Who Have
Fought the Fight

Sunday, November 18, 2007

Superman

Superman has nothing on my son. He's been hit with so many drugs, chemicals and medicines I can barely keep up with them all. He's had test after test after test and he's been laying in a hospital bed for weeks. Yesterday he lost his hair. Today he had a tube put down his nose, he didn't like it, but he tolerated it. He listened when I warned him it would hurt and did it anyway. We went for CT scan later and he lay there still and waited while 3 people picked at tubes in his chest. The sound of the machine startled me, but he lay there and took it like a man.

I've never been more proud of my son. He's my new superhero.

And So It Goes

I woke up to a pounding headache this morning. I can't decide if its general stress, caffeine withdrawal or from the habit of grinding my teeth at night. I took some Excedrin and tried to fall back asleep but it was futile. The lights seemed too bright at 5:30am so I lit some candles and turned on a hot shower.

I'm having a harder time dealing with Henry's cancer lately. The effect of his therapy on his appetite has been to effectively eliminate it. I'm used to taking pride in the healthful way our children look; full boned, with that lean childhood muscle. Now Henry's knees are bulging in the middle of thin, flaccid legs. He's noticeably lighter now when I lift him and seems frail. When things are going on inside of him, I have to strain to imagine what's going on. That can have its own pitfalls, but they're fleeting. Now that the chemotherapy has taken his hair and his appetite, its more evident all the time. And this is the beginning...

We've been getting the itemization of bills from the hospital. I suppose they send them so that you appreciate the insurance company. It's certainly having that effect. My heart starts racing with each envelope that comes. I've heard of the stories of fighting with the insurance companies about coverage during a time like this, something I dread. So far, no sign of it. In fact, each time I'm on the phone with our provider, they consistently end the conversation with words of empathy. I hope that extends to any differences we may have in the future.

My mother returns home today for a short time and will return in early December. She's been our primary source of support during these last weeks. I think she'd rather stay, but I'm glad for her to return for a while to rejoin family there and to put things back in order after her abrupt departure in mid-October. Thank you Mom.

We're all off to Baltimore early today. We'll leave the girls with Tara's folks, spend some time with Henry at the hospital and then get over to the airport. I'll swap with Tara and we'll start the week again. We're crossing our fingers to be home by Thanksgiving, but we're not counting on it.

Saturday, November 17, 2007

Kind Hearts

Tara arrived early to take over for me at the hospital. We spent a half hour or so reviewing his care, our thoughts and some plans over the next couple of days. My mother returns to Kansas tomorrow for a couple of weeks, so I'll be driving her to Baltimore on our way to swap again tomorrow.

Before I left the hospital today, I leaned down to give Henry a hug. I felt the warmth of his feverish neck on my nose and his little arms reach up near my shoulders. I kissed his neck and felt the layer of fallen hair all around him. It felt so good to have him hug me. He took one hand down and reached for his beeble (his binky) and kissed me. What a sweet boy.

I drove to a soccer tournament for Anna directly from the hospital. I didn't arrive in time to see even a part of their last game. I was, however, the beneficiary of an amazing act of generosity and support from the team, parents, and my extended soccer family. Just as we didn't ask for Henry's cancer and feel helpless regarding its outcome, the generosity of friends, family and coworkers has been equally overwhelming and we're in awe of the outpouring of kindness from everyone around us.

Someday, its my sincere intention to explain to Henry, what kind of love and the extent of support that was provided him and his family by those around him. I can only hope that it will help him become as caring for others as those around him have been to us. As it is, I expect that these times will leave a lasting impression on our girls and give to them a generous and caring heart for other's as well.

Tara called me late in the day and told me that Henry was finally tired of little hair falling all about and they'd pulled the remaining bits out. She says he has a fine 'fuzz' over his head. I heard her over the phone saying she liked his 'new haircut' and its just like daddy's. I'm proud of him for handling that so well. They went on an elevator ride and took a wheelchair to an x-ray today to check out his belly and his chest. Its good for him to get out and about.

Everyone's off to bed now as I write this. We're hoping that his constipation issues resolve soon as its preventing him from taking some of his medicines and causing a lot of anxiety about nutrition. As for now, we're just going to try for a good night's rest and cross our fingers for tomorrow.

Friday, November 16, 2007

Wholesome Medicine

Henry slept from about 11am today until around 5pm. This is the longest period of restfulness since this whole ordeal began. He rested quietly and when he did wake up, he was in a fine mood. We talked and took another wagon ride. He asked for food - he hasn't eaten it yet, but its a start. His constipation issue seems to be 'moving along' (for lack of a better phrase).

Henry's had all kinds of medicine today. Zosyn, Amikacin, Bactrim, Tylenol, Miralax, Senna, Nystatin, Ativan and something called Larry's Solution. He's begun getting intravenous nutrition or Total Parenteral Nutrition (TPN) because he won't eat. He had his platelet transfusion early today too. For all the stuff they've given him, the thing that made him feel better was good old fashioned sleep.

Sometime after his nap, he said, "I like it when you hold me." He spent a little time on my lap. We laughed a little. I put him back in bed. We read books and he fell asleep while I read to him. His peacefulness tonight was the best medicine for me.

New Baseline

He rested quietly again this morning after a decent night's sleep. Henry's carried a fever of well over 100 F for most of the night. Before he fell asleep last night, he had an episode of increasingly irrational behavior - random phrases he'd repeat over and over, sometimes angrily. "Who's going to cut the rope?" "Who will catch my poopies?" "I don't want to cut my lips" This lasted for close to an hour. He couldn't be talked to or consoled. In fact the more I tried the worse it seemed.

I got quite anxious and pressed for the resident to speak with our oncologist. In the end, the attending from the floor below came up and reviewed the resident's assessment and assured me that it was likely due to the fever, but they'd monitor it closely. They gave him Ativan and within minutes he calmed down. His temperature returned to close to normal and he slept. He'd wake every couple of hours and twist and turn, groaning, "I want to go on a wagon ride".

Overnight he continued to receive tylenol and antibiotics (Zosyn & Amikacin). His platelet count had dropped sufficiently to require a transfusion (Platelets = 22, normal 150 - 350 K/cu mm), this following his blood transfusion from yesterday (RBC 2.33, normal 3.9 - 5.3 M/cu mm). Thankfully, he had no reaction to the platelet transfusion, which apparently manifests quite quickly via specific abdominal sounds. His counts are not yet showing signs of turning around, but I think that they should be soon. We are still awaiting his Vincristine administration, held over from day 15 (yesterday).

This morning we finally went on the long awaited wagon ride. It was short-lived, as expected. He's uncomfortable sitting up yet. The desire is good though. We went once around the floor, pointing out the different parts of the beach scenes painted on all the walls. We returned to the nurse changing his bed sheets. They're beginning to be covered with his hair that has now begun to fall out. I'll run my hand through his hair and its as if he's shedding. This promises to be anxiety provoking for him. As much as we've talked about it, he's fearful of anything different right now, not to mention he hates hair in his mouth, which seems inevitable.

I try to think of him without hair. Like anything along this journey, I can't quite seem to imagine how it will seem to the full effect that reality is sure to bring. We're prepared with stocking caps and the like for him (and me, as I've shaved my head for solidarity). Every new bump we encounter makes this more and more real all the time. When I'm home things seem relatively normal, when I'm at the hospital they seem, well, different. My idea of normal is starting to adjust, the home version and hospital version are merging into a new idea of what normal is for us now.

Thursday, November 15, 2007

Defenseless

When you have no white blood cells simple things are dangerous. I never thought a fever could be as scary as Henry's was yesterday. They told us to expect it, I guess I just didn't think it would be so soon. He had fits of discomfort all morning and by 1pm was running a fever of 100.3 F.

He was a trooper and put on the mask with no problems. We went to the Washington County Hospital Emergency Room where they drew blood and, after consulting with our doctors at Hopkins, they started him on two broad spectrum antibiotics to try to kill the infection. They gave him a chest x-ray for pneumonia and dipped his urine. They began culturing his blood but that takes days to grow. We sat in the hospital for about 7 hours through this and were finally taken by ambulance to Hopkins. Tara took over for me to get him down there and she and Henry didn't get into a room until around 3am. Long day and short night.

He is currently being monitored and treated for constipation. He's to get a blood transfusion today to help his red blood cells recover. He was also already scheduled to get his last dose of Vincristine for this first cycle of chemotherapy. They will not let Henry leave the hospital now until his counts return to a certain level. This is entirely dependent upon him as an individual. Some recover quickly and others take longer. It may be a week before he is able to return home; then it will be for a few days and we'll have to go back for his second cycle.

Tara told me this morning that Henry has handled the adversity fairly well. He is more comfortable than he's been as they're giving him fluids; he hasn't been drinking much. I'm going down today with Tara's step-father to relieve her and so she'll have a safe ride home. Our plan is for her to come back on Saturday and do the same for me.

Tuesday, November 13, 2007

One Month

Someone pointed out today that it's been one month since Henry's diagnosis. At times it feels more like 2 or 3 years and other times, like yesterday. So many of the details are still very clear. The announcement from the ER doctor of a 'mass' in his brain, the diagnosis of a medulloblastoma as the likely pathology, the meeting with the oncologist with the awful details of what was likely to come...

Surveying our lives today, I was trying to imagine myself on October 12, looking at myself today sitting beside his living-room bed side, with the 'Childhood Brain and Spinal Cord Tumors' book sitting there, a three and half inch scar on the back of Henry's head.

I feel fairly certain I would have considered it a nightmare and so unlikely an event that I'd dismiss it almost immediately. But here we are, admitting the accuracy of the oncologist on the night mentioned above, assuring us that we'd acclimate and do what then seemed impossible to consider. I couldn't have believed one month ago tonight that I'd ever laugh or smile or be able to cope with all of this and I'm somehow comforted that, having made it this far, that we'll be able to go the distance, buoyed by the unending support of family and friends.

Monday, November 12, 2007

Life Unfolding

If you don't know what's around the corner, does that mean its not there? Before Henry was diagnosed, I never fully considered the weight of that question.

Today brought more tough challenges. Tara returned to work. Henry had his first day back at the hospital since our first chemotherapy and we faced up to a bit of the reality of having a chronically ill child. Partly because of her background and partly her nature, Tara has consistently been thinking several moves ahead of this thing. For me, I just don't digest it until it happens. I don't know if one or the other is better, perhaps they're complimentary in our situation.

Tara has talked to me about the long days of tests, I've imagined scenes of road-side stops holding the head of a vomiting child, sick from chemo and even considered how I'd handle a roomful of children with no-hair, realizing the circles of lives that had been up-ended with their diagnoses. My imagination, it seems, just isn't up to the task. I feel like I barely made it - and that was with the help of my very capable mother at my side.

Henry has a rash around his midsection that I can only guess must feel like fire sometimes as gauged by his reaction. Guessing among that, nausea, constipation and general aches and pains - and what to do for these - parental anxiety is constantly piqued. All these things seem intensified by the hospital.

I'm not really sure how our 1pm appointment kept us there until just after 5pm, but those were long hours. His blood count resulted in having to schedule Henry's first blood transfusion (for Thursday) as his red blood cell counts are low. His white blood count is so low, its below the testing threshold. This means - and its nothing they didn't warn us of - that he is at high risk for infection. If we measure a temperature over 100 degrees, then we're off to the emergency room at Washington County to be later admitted to Hopkins.

So as Henry drifted in and out of sleep and fits of unease, I wondered what was next. Will we be back in Baltimore yet tonite? Tomorrow? Wednesday?

This didn't heighten my anxiety as I thought it might. In some respects I feel like we're watching a piece of paper unfold. Some we can see, some we cannot, but either way, its all been written. I look at pre-diagnosis pictures of Henry and realize the cancer was there. We just didn't know about it yet. For some reason thinking of things this way releases me from feeling like I have to control everything and just helps me to accept it.

So what will tomorrow bring? Just because we don't know doesn't mean its not there - we just can't quite see around the corner.

Sunday, November 11, 2007

Riding the Tide

Although cold outside, there was some warmth in the Scheck household today. We began the day early with Henry up at 5am. Yesterday he really seemed uncomfortable. All day long the parental concern was on high alert and took its toll. I suspected today would be similar but again we were surprised.

Henry's comfort level today was improved. He rested well, taking a two hour nap around 1pm. Grandma Linda and Grandma Jane kept the girls busy today with crafts and activities which contributed to some quiet around the house. He didn't moan with discomfort as much today either although he still clearly had some rough times. He's got a rash around his mid-section that seems to be very irritating to him as he continually scratches. Lotion seems to ease this a bit along with an antihistamine we've begun giving him. He still complains, although not quite as frequently, about his stomach. We're not sure if this is nausea, constipation, or other side-effects of chemotherapy. We've spread out his doses of nausea medications which hasn't seemed to effect his comfort level so we'll probably continue to reduce or spread them out as we go. I feel like the body will do its best to correct itself but will have difficulty when there are so many other things going on. Getting him off some of these medicines, as long as it doesn't affect his comfort, should hopefully help.

Tara found some encouraging information on the internet regarding a recent study for high-risk medulloblastoma that suggested some increased survival rates. Nothing to pin our hopes to necessarily, but encouraging nonetheless.

Tomorrow my mother and I take Henry back to the hospital for a clinic visit as Tara returns to work for the first time since this all began. Henry is currently in the midst of the nadir of his white blood cell counts. Days 10 to 14 are to be the worst according to the oncologist. So far our hand washing and household cleaning regimens have seemed sufficient, although as the season progresses, Tara and I are preparing ourselves for at least one or two unplanned trips to the hospital.

My anxiety for tomorrow is mostly about the ride in the car. Henry's not keen on wearing that darn mask and the motivation of leaving the hospital is definitely not the same as returning. They've told us that its possible that if his counts are lower than expected, then he may need platelets or blood transfusions - apparently the blood transfusions take some time and may require another trip the following day due to our late appointment time tomorrow. And so it goes, another day of withholding expectation and just riding with the tide of what comes. We're learning day by day that to hope for one thing or another will only serve to create another expectation to lose. As fast as this is all coming at us, I'm finding it easier to live in the moment and accept what is.

Tiny Bits and Pieces

Yesterday I got out of the house a bit to go to Anna's soccer practice. Although it was chilly, it felt good to be outside doing something. Another wonderfully supportive circle of friends for me and our family. It was a great few hours. Tara had a similar experience the night before with her mother and sister as they'd gone out for the evening. We're finding it necessary to recuperate this way now and then. So much more than normal, it becomes a deliberate expression of dedication to each other and Henry that we aid in our mutual ability to be on top of our game.

Each day we have to give Henry numerous medications. I mentioned previously his aggravation with us regarding the taking of medicines. While he takes them more cooperatively now (with less spitting and holding down) its still an unpleasant task for all involved. When he's tired it's a bit of a fight. Our bedtime now involves a 25 minute course of medication, that I hope becomes routine. It's not painful for him, but its clear that he's disturbed by the whole thing.

After giving last evening's course - during which he fell asleep - I walked into the hall and remembered how we used to brush his teeth then run full speed into his bedroom to cover himself with this covers and 'hide'. I'd do the "Where's Henry?" thing for a few minutes and he'd giggle like crazy and then 'scare' me. Books would be read, kisses and hugs given along with "I love you" and songs. I'd say - "Henry - I have one question for you...deal or no deal?" and I'd tickle his chin with no mercy until he'd squeal "Deal! Deal! Deal!". As I passed his room tonight on my way to the stairs, leaving him asleep in ours, I wondered if I'd see him do that again.

Some of the losses we've felt over the past weeks have been enormous - shaking practically every expectation of our lives - and some are coming in tiny bits and pieces. Things will undoubtedly be different. Right now, we're just so unsure how.

Saturday, November 10, 2007

New Routines

Our day home yesterday was one filled with new routines interrupted by reminders that this is now the norm. In the hospital Henry was on intravenous medicines managed by the nurses. At home, its all us. Leaving the hospital knowing this was reminiscent of leaving the hospital with our first child - glad to be going home, but nervous about new responsibilities.

We'd had to get four medicines from the pharmacy and once home we received a good sized box of medical supplies and instruction from a home nurse. She taught us how to administer the medicines intravenously through his central line, a catheter into one of his arteries. There is a series of six syringes that must be given in a specific order over the course of 20-25 minutes to be given daily. This medicine is to provide him with a stimulating agent for his bone marrow, that is to say, boost his white blood cell growth and increase his natural immunity. The catheter in his chest allows us to do this easily without pain, but he still gets very aggravated by any attempt to give him 'medicine' in any form.

Henry has a bed in our living room now for lying down during the day. He alternates between that and sitting up in the chair, as well as activities here and there when he finds small bits of energy. He seems to still be experiencing some of the effects of chemotherapy in that he's lethargic, a bit nauseated, and his appetite is all but non-existent. They warned us of this and we know we've only been 48 hours, but its difficult to watch as a parent.

Coming home after his tumor resection was so different. He was playful and interactive, we could be outside and have friends over. I was able to forget about his condition for a while and just rest in the enjoyment of him playing. After the chemotherapy, however less outwardly invasive, he seems to have at least a low level of discomfort most of the time and is tired but doesn't seem to be able to nap easily. That said, he did have a feel-good spell of activity today. He played a board game with Mommy and rode his 'cruckie'. (He's allowed outside with certain restrictions) He ate just a bit of ice cream too. These brought a few smiles to his face and, of course, to ours.

Thursday, November 8, 2007

Welcome Home!

We're Home! The first round of hospitalization for chemo is done. The day started early with Henry getting up at 3:30 am. Yes, that's 3:30 am. Not a typo. The first thing he wanted to see was the calendar that Tara had made for him with a smiley face on the last day. "I want to see my red smiley" were among his first words as he woke. He was ready to go home. Tara called for reinforcements early and I was out the door a little after 6 to avoid traffic. After some medicine to calm his stomach (he didn't get the cisplatin until this morning), he played quietly for almost an hour with his trucks. I would have given $100 for a camera at that point. I just sat and watched him while Tara caught up on some sleep. It was wonderful to see.

His mood deteriorated as the medicines waned, not to mention his lack of sleep was catching up fast. He insisted on sitting in his stroller - I don't think he wanted to miss the opportunity to take off. He was feeling pretty cheeky too. He wouldn't let me turn the TV on for him (a grand distraction) and kept switching it off using the hospital remote as I fumbled with the channels on the main TV unit. He won that round. Tara finally talked him into the TV and into sitting on her lap instead of the stroller. He fell almost immediately to sleep. He didn't wake up until I was pulling the car around to leave about 4 hours later.

The motivation was strong to leave that place and the rest he'd had didn't hurt either. The mask was on him when Tara, our nurse and Henry strolled up to the car. I was secretly glad I didn't have to have that fight with him, but it didn't turn out to be bad at all. He made it most of the way home without much of a fuss. The construction zones where we had to don the mask again and again were uncomfortable reminders to him and he became intolerant of the it late in the drive, but I considered the whole thing a great success.

 

We drove up to the house and to wonderful welcome home signs made by the girls and some of our lovely neighbors. Henry quickly settled in to watching TV. He perked up so much when the Anna and Sophie got home. They huddled around him like bees to honey. They brought him toys and talked to him. He responded with more voice than he had the entire day to us. Tara and I both teared up because it became immediately apparent that the girls would be able to do things for him that even we, or the doctors, nurses and social workers for that matter, just couldn't.

Tonite we all watched a movie together. Henry went to sleep early and easily. There were no demands on our time this night. Tomorrow we realized we had no plans either - a quiet day ahead. Next week Tara will begin to work again; just part time for now, but symbolic for us of a return to some normalcy. We are back at Hopkins twice next week for blood count checks, dressing changes, additional outpatient chemotherapy and the like. But for now we have a few days at home and we're so very glad for it.

 

Wednesday, November 7, 2007

A Different World

Seven days has never seemed so long. I'm sure it feels even longer go Henry. Its obvious he's tired of lying in bed day after day, seeing people come and go while he has to stay. He's even begun to deny the television as a source of distraction. During his moments of relief today he played with dozens of cars and trucks and has been play acting with his teddy bear, delivering medicines in tubes we've made to look like his central line. He takes the bear's blood pressure and temperature, changes its bandages, and gives it medicine, then says, "You're sick. You cannot go home!". One more day we tell him, one more day.

Yesterday evening Henry received the same dose of medicines as the night before; Etoposide (2 of 3 doses) and Cyclophosphamide(2 of 2 doses). Tonight, along with the final dose of Etoposide, Henry will receive Cisplatin. This drug is the reason for the baseline hearing tests done last week. One of its more frequent side effects is loss of hearing in the high pitch range. They dose very carefully and conservatively to do everything to avoid this outcome. He will be tested at the end of the month for hearing loss. They assure us that the tests they do will be able to detect otherwise unnoticeable hearing loss. As with some of the other drugs, it may also contribute to the hair loss (alopecia) seen in chemotherapy patients.

In addition to the chemotherapy medicines he is on, he has been on several medicines for nausea - Odansetron, Benadryl, and Ativan - as well as one to prepare him for the Cisplatin called Mannitol, which apparently opens the blood-brain barrier (for greater chemotherapy effectiveness) and flushes the kidneys. The intensity of the treatments seems to have increased throughout our week here. Our only encouragement for the following cycles when we have to return are the words of our nurses and doctors alike saying that the first cycle is the toughest to endure.

Tomorrow we come home to a different world. The mask Henry must wear out of the hospital is a looming barrier to our departure, but we're banking on the motivation to leave will be sufficient. He will have to wear the mask if in a crowd, near construction and in the car unless we're recirculating the air. While he won't have to wear it at home, to reduce the risk of infection, we cannot have live or dried plants in the house and must wash hands diligently when handling food, using the toilet, and coming in from outdoors. We must discourage visitors. If he gets a fever, we'll have to head immediately to the emergency room. We've lamented the change this will require in our lives, but are prepared to accept our new reality to ensure Henry's health.

Making this all just a bit easier has been the support we've received friends and relatives from coast to coast. Today Maury stopped by with a list of the offers for help. I was astounded. I cannot find adequate language to express the depths of our gratitude and thankfulness. You humble us with your generosity. I've never been real good at accepting help but the intensity and scale of this has forced me to see and accept our interdependence. So I say thank you. Directly or indirectly, each gesture aids us in providing the best care we can to our family and to Henry. We will try to be gracious recipients and sincerely hope someday to be in the position to pass on your gift.