We're home again

We're home again. After a delivery of equipment and supplies and a visit from a home care nurse, we're set to take care of Alan's NG tube at home and he's upstairs in his own room asleep now. And no one is going to be putting any BP cuffs on his leg, sticking thermometers in his arm pit, or wrapping a pulse/ox monitor on his toe.

Our oncologist moonlights as a juggler

With three bolus feeds during the day in addition to the overnight continuous feeds, Alan didn't have much to eat by mouth yesterday, and has had virtually nothing today. He tasted some bacon, had a crunchie, and decided he liked chewing on the diaper cream tube. I was going to discuss the possibility of reducing the bolus feeds so he would get hungry enough to eat with Doc P today, but when we weighed him last night, Alan had gone down from 9.1 kg to 9.0 kg. He's losing weight even with food being piped directly to him.

This morning Doc P and I talked about all the conflicting needs for Alan - he needs to have his nutrition up for the big chemotherapy treatment on Monday, he needs to continue to eat by mouth, we can't keep the NG tube in too long or it becomes a risk for sinus infection. Right now getting his strength up to deal with the next of chemo is the highest priority and we'll have to juggle all the others as best we can.

Auntie Janet and Uncle Peter had both called to tell about Gung Gung's experience in the hospital with an NG tube. The Ensure was so rich and the tube so irritating that he didn't want to eat. Of course, they weren't going to take the tube out while he wasn't eating. Catch 22. Some other parents on the PED-ONC mailing list had responded saying how great the G-tube was, especially compared to dealing with an NG tube. It may end up being the better option.

With that in mind, we're getting out of the hospital today. They'll be sending us home with the equipment and supplies to do the NG tube feeding at home. Now that his blood tests are normal again (no more high potassium or calcium) and he's no longer dehydrated, the only left is the nutrition. They'll teach us how to take care of that at home, so there's nothing left to keep us at the hospital. It will be nice to be home again!

At least his head is a cute shape

A few things happened yesterday. First, we figured out we'd be going home with the NG tube still in. Second, while trying to clean smushed-up french fry goop out of Alan's hair, I came away with a handful of hair. Finally, the amount of hair collecting on Alan's pillow case and sheets was getting thicker.

Since I figured the hair stylists at our regular salon wouldn't be comfortable cutting hair around the NG tube and the pace at which Alan was losing his hair seemed to be picking up, I had a stylist at the hospital come to our room to give Alan a haircut. While he still had a good amount of hair, the shedding was getting to be quite a mess, and I didn't think I would be able to handle the increasing patchiness on his head, especially since we hadn't even had his first hair cut yet. Better to take care if it all at once, while we had access to a hair stylist used to working around the NG tube.

Before


During


After


The haircut when as smoothly as can be expected. Alan was not too happy to have yet another person poking about him, but the stylist was able to save us a few locks from this first haircut and take care of the rest. Not quite the occasion I was looking forward to, but we can to the First Hair Cut ritual in the race car seat for his first post-chemo hair cut.

Once he was done, Alan was happy to be free to watch Baby Einstein again. Daddy was upset to see his bare little head, ironic since he'd been on Mommy's case to get Alan's hair cut for months. At least Alan has a cute shaped head.

Feeding

Well, the hospital fries for lunch yesterday were not a hit, at least not as food. Alan did not want to eat the fries, but had a grand time squishing them and playing with them. There was french fry goop all over his crib, in between his fingers and toes and in his hair. The McDonald's fries that Daddy brought in the afternoon were marginally more acceptable. At least Alan had several bites of those. That, along with a few bites of bacon, a bite of chicken, a couple of crunchies, some beef broth and a lot of unflavoured Pedialyte is all that Alan had by mouth yesterday.

Our oncologist, Doc P came to check on Alan this morning and was not encouraged by his food intake. Most kids lose their appetite immediately after chemo but they bounce back and recover enough in time for their next course of chemo. Alan's eating had been suffering before the chemo and even before our cancer diagnosis. so we really have no margin for error here. He's willing to try our other oncologist Doc A's plan until Alan's next big chemo treatment on Monday - send us home tomorrow with the NG tube still in so we can still feed him overnight to be sure he gets adequate calories and attempt to get him to eat during the day. If we don't see a rapid improvement in his eating though, we'll have to talk about putting in a G tube. We simply can not risk Alan losing weight or getting dehydrated while he goes through chemotherapy.

Even with a tube in, it will be nice get go home. It's hard for Alan to get enough sleep with nurses and aides constantly coming in and out to check his vitals, check his tube and IV, beeping monitors, cleaners, computer tech guys (not kidding! they were checking out the strength of the wireless network throughout the hospital), etc. Plus we want to be out to be able to attend the Relay For Life that Mommy is walking in. The playgroup lemonade stand (more on that later) is postponed because of the swine flu precautions in a neighbouring school district, but we hope to be able to put in an appearance there too.

Eating

He still isn't. Eating that is. We've been feeding by tube since Friday night, first with continuous feeds, and then starting Saturday night with a bolus of Pediasure over an hour, with a two hour break before the next one. An hour after the bolus is finished, we have been trying to get him to take something by mouth. All he'll take is water or watered down beef broth. He even turned down ice cream yesterday!

This morning was a little more encouraging. He ate half a crunchy and a few bits of bacon. It seems he's craving salty foods. Chemotherapy is known to change taste buds, causing kids to reject what used to be favourite foods. We've asked for french fries and some toddler friendly meat with his lunch to see if he'll have some of that. They aren't going to let us go home until we know that he'll be getting enough nutrition, so hopefully we can figure out what he wants to eat soon.

Learning

Ever since the diagnosis, we have been doing a lot of research, searching the Internet for articles on the tumor, the drugs, the side effects, looking for support groups. This is all "book" learning which feeds our need to know, and while helpful, it isn't really what's needed to take care of Alan. It wasn't until this morning that I started learning how to be the mom of a cancer patient.

The needle accessing Alan's port had come out last night, and the nurse putting in the new one obviously didn't have a lot of experience with ports. The oncology ward was full when we were admitted, so we were on a regular floor, and so there wasn't the same level of familiarity with accessing a port. The process was far more difficult than it should have been and Alan was uncomfortable all night. At the time, I wanted them to start over again but decided not to ask. I didn't want to make waves, rock the boat, put up a fuss, etc. In the morning, they couldn't draw the blood for his labs and we had to go through the whole process again.

That was when I told myself not to doubt my instincts again. This time, a nurse from hematology came down to take care of Alan's port and she reinforced what I had already decided. She told me not to hesitate to ask for someone from the hematology or oncology with more experience if I felt the need. Next time the voice inside whispers, I will speak up for my baby and ask for someone who can take care of him properly.

Monkeys are funny

Between the port and the feeding tube, as well as the intermittent blood pressure cuff and pulse/ox monitor, poor Alan has been looking like a Borg and feeling pretty low. The nausea has been acting up again after yesterday's chemotherapy, though with his feeding tube going directly to the gut at least there wasn't a lot to throw up.

Big brother Kevin came to visit today with Daddy, and he's a pretty amusing guy. First, he was played Kevin Bounce, Daddy Bounce and Mommy Bounce which is always fun. Then Auntie Chelle and Auntie Maria came to visit, and they got Kevin doing a round of Monkeys Jumping on the Bed.



Alan loved the dancing monkeys!



It was so nice to see our little man smile again.

Hair today, gone tomorrow

While Alan had his ultrasound today, we saw some hair on the sheets. It will be three weeks tomorrow since his first chemotherapy, so it's about the time that he would start losing his hair. I just didn't know that it would hit me so hard.

Since we got out of the hospital on Sunday, I had been wanting to take him to get his first haircut. The salon where big brother Kevin has his hair cut takes a special picture and puts it with the lock of hair in the little pocket of a memory folder. The week has been so busy, we hadn't had a chance to go, but I thought we would do it this weekend. Now we're here and his hair is already starting to fall out on it's own.

With everything happening, you'd think that losing out on having Alan have his first hair cut at the same place his big brother went to would be a minor thing, but it's just one more thing that the cancer is taking away from us.

We're back

After conferring, Alan's docs decided that the lack of eating and weight loss was serious enough that they wanted him back in the hospital. First, to get an ultrasound to check his kidneys. Even though the tumor is retreating, the kidneys may still be having problems, which in turn could be causing problems with his eating.



Of course, while the tumor was growing, not only was it taking nutrition away from him but it was also crowding his stomach, making him feel more and more full. We had noticed in the 4-6 weeks before the diagnosis that Alan was less and less interested in solid food, and by now he's out of the habit of eating.

Which leads us to the second reason we're back, so they can put a feeding tube in him. They put the feeding tube in after the ultrasound while we were still in radiology. We were hoping to avoid this, but given that the amount of food he eats most days can be measured by the teaspoonful it was unavoidable. The docs want to feed him by tube to get his strength back up and hope by then he'll be more amenable to eating again.

As for The New Normal, the doc told me on Tuesday I should have a bag packed in the car in case a doctor's visit turned into a hospital visit. I did that right away, not knowing my packing choices would be tested so soon. Not bad, all I was missing was my contact lens solution. I was going to get some more the next time I went to the store, go figure! Of course, the hospital gift shop only had soft contact lens solution. Why is the world so prejudiced against people with gas permeable lenses?

Office visit 4/24

04/24 11:45
ANC 4176

Woohoo! The white cell count is up and looking good. We had Alan's third chemotherapy treatment today, just vincristine again. The doc felt the tumor and it's smaller than it was on Tuesday. Both docs were concerned with his weight and wanted to give him some IV fluids while he was in the office. While waiting for the fluids and chemo, Alan was gulping down some water and promptly threw up all over himself and Mommy. Note to self: pack spare outfits for two when going for an office visit.

Fresh air

Warning: Poopy talk ahead.

Hurray! Even though he's had very little to eat or drink other than water over the last few days, Alan had a massive blowout this morning. That has to be cleaning his pipes out and he's definitely feeling better. Between the codeine and the chemotherapy, we will have to watch out for constipation.

After a nice long morning nap, we took our first trip to park after coming home. He loved the fresh air, the sunshine and the breeze in his hair. What a welcome change from the dark hospital room!

First office visit

04/21 10:25
ANC 304
APC 1026

Today was our first visit to the doctor's office. We got a tour of the clinic, including the choice of Seashell, Giraffe or Mushroom rooms for upcoming chemotherapy visits. The tumor is definitely shrinking. The doc can tell just by feeling it that it is smaller. He is thinking of waiting until Alan has completed the second VAC treatment to do an MRI, rather than doing at CAT scan sooner, so we can get a complete view of the shape of the tumor. We know it's shrinking away from where we can see and feel it on his abdomen, but he would like to see if it has shrunk at the back and other interior angles as well. Since Alan would need to be under anasthesia to do an MRI, it would be best to wait until the chemotherapy has had a chance to really attack the tumor.

Today the nurse drew blood from Alan's port. We put some Emla cream on the site before coming to the office, so he didn't feel any pain from the needle. He was more upset about being held down, and of course, the vitals that were taken earlier. That silly blood pressure cuff again!

The doc and the nurse were surprised to see the rash on Alan's chest. The doc thinks it might be a fungus that developed under the bandage while he was covered up for so long. It wouldn't take much to get it wet. So we add another prescription to the regimen. The doc also upped his dose of Tylenol with codeine, so hopefully, our little man won't be as cranky.

During the exam, we offered Alan a little snack, which he accepted by opening his mouth rather than grabbing. The doc said to expect some regression - Alan will want to be babied, even as he still demands some independence.

The cryptic letters and numbers at the top of this post were the results of Alan's blood test today. His white cell count low was understandably low, as shown by a high lymphocyte ratio The lymphocytes are not affected by the chemotherapy. When the production of the other blood cells affected by the chemotherapy slows down, the ratio of lymphoctyes to the rest of the cells will rise, indication a greater risk for infection.

ANC is the Absolute Neutrophil Count - a count of the white blood cells that kill bacteria and an indicator of Alan's ability to fight off infection. 1500 is normal in a healthy child. The new normal is between 200 and 500 - still at a high risk for infection, but to be expected in a chemotherapy patient. If we dip below 200, then we are at a very high risk. APC tracks another kind of blood cell which will eventually boost the ANC, so a combined APC and ANC can indicate if Alan's immune system is heading for an upswing.

Being a new chemo mom, I was doing a lot of chicken scratches on Alan's lab results and typing furiously into the phone. Finally, I asked one of the docs if they had a beginner's guide for parents new to the process. He gave me a copy of Childhood Cancer: A Parent's Guide to Solid Tumor Cancers which helped me clarify and remember some of the information. I found some more details at the St. Jude Children's Research Hospital website's Did You Know page on blood products and blood counts.

There will be plenty of posts on the topic as we try to digest all this information and what it means. Part of The New Normal is knowing what Alan's counts are and what it means to our day to day living. Stay tuned for a more complete explanation of the APC after Alan's next office visit on Friday when we have a chance to ask the docs for more information.

A modern village

This is a letter I sent out to my MOMS Club today. If you are a mom and aren't a member, what are you waiting for? Even before this all happened, the club has been a great source of support and networking, but since this all started, they have stepped in quickly and with a vengeance to help us.

Which is not to forget our wonderful neighbours, the PTA at Kevin's school, good friends and even friends of friends who have offered help and expressed an interest in Alan's progress. Now we have a chance to catch our breath, we might even be able to take everyone up on their offers!

Dear moms,

After two weeks in the hospital, we are home with Baby Alan. We still have a long road ahead of us, but we have started treatment for Alan's cancer and things look good. I wanted to let all of you know how much Harold and I have appreciated all the help and good wishes. Every e-mail, every comment on the blog, every card, every offer of meals and childcare and comfort, every hug has been cherished, not just for itself but also for the support it represents.If I haven't had a chance to respond directly to an e-mail or comment yet, please know that we are reading everything and will be in touch as things settle down.

As I have said, fighting this tumor is going to be a long term endeavor, so I will definitely be taking advantage of all the offers of meals and help. Cookie has set up a care calendar up for us with a few tentative dates, and once I figure out a post-diagnosis routine we will fill it in with more firm dates.

Everyone is really living the spirit of MOMS Club - Moms Offering Moms Support - and I am honored to be a part of it.

With thanks from the entire family

Research Links and Stories

Research

J Pediatr Hematol Oncol. 2002 Dec;24(9):722-6.
Treatment of infantile fibrosarcoma with chemotherapy and surgery: results from the Dana-Farber Cancer Institute and Children's Hospital, Boston.

Pediatr Blood Cancer. 2009 Jul;53(1):23-7.
Infantile fibrosarcoma: clinical and histologic responses to cytotoxic chemotherapy.

JCO Early Release, published online ahead of print Nov 16 2009
Journal of Clinical Oncology, 10.1200/JCO.2009.21.9972
Infantile Fibrosarcoma: Management Based on the European Experience.

ESUN April 2009 Volume 6, Number 2
FIBROSARCOMA OF BONE: REVIEW OF A RARE PRIMARY MALIGNANCY OF BONE


Stories

Alexander, Arizona - 6 weeks old

Cooper, Tennessee - 6 weeks old

Isaac, Missouri- 1 month old

The new normal

We're home now but we can't say things are back to normal. As the doc says, we have to get used to a new normal. Some of it feels like old times, like counting wet diapers. Some of it is new, like keeping track of when and how much medication Alan is getting. Our happy little monkey is going to have to adjust to a new way too. While he was thrilled to be home and away from the constant poking and prodding, his new freedom was actually frustrating because of his reduced mobility. We have been cautioned not to roughhouse with him - no climbing, no jumping, no bouncing. Nothing that could cause harmful bleeding. Not that he was able to even contemplate any of that today. It was a major effort just to crawl across the living room to get to his playground balls.

Alan was happy to have bath time again and he had fun, albeit a little more subdued than we are used to. We also had to get used to his little body covered in bumps (from the port), bruises (from the biopsy), and rashes (from the bandages). Daddy wanted to know where the Star Trek medicine was. "Who cares about flying cars? I want my Star Trek medicine!"

The new normal also means we are going to have to juggle things better. Until now, Alan's needs had to be subordinated to his big brother Kevin's. Alan was hauled around town according Kevin's school and therapy appointments, not his own nap and feeding schedule. These last two weeks, Kevin has been left to the care of a patchwork of amazing friends while Mommy and Daddy put all their energy and attention into Alan's diagnosis and treatment. He's had fun with his little friends, and their mommies have been incredible, but it's not the same thing as having Mommy and Daddy. Now that we're home, we'll have to find a balance.

Today's new label, TNN, means The New Normal - life after the cancer diagnosis.

Heading home

One more visit from the doc this morning with the results of yesterday's ultrasound. The tumour is only ever so slightly smaller, but that's to be expected. The important thing is that it's stopped growing. It's only been one week since we started treatment and we shouldn't expect to see results until closer to the three week point. The doc had the ultrasound done so he could check on Alan's kidney and liver function - the tumour has been taking up all sorts of room there and he wanted to check if we would need to monitor them more closely. Everything looks fine though, now that the tumour isn't growing to crowd them even more. I'll just have to start counting wet diapers again (to keep track of output from his kidneys).

The nurse removed the needles accessing Alan's port. It was not fun removing the adhesive and bandage covering the area, and now that it's off, we can see a bumpy rash - he's either allergic to that bandage or the cleaner they use to get the adhesive off. Luckily, we won't have to have such a heavy duty cover on the port when it's accessed at the doc's clinic, and hopefully we can figure out what caused the problem before we have to do this for more than a day at a time again.

We've been packing everything up. Aside from all the standard gear that Daddy was asked to bring daily at the beginning of the visit, we have the care packages and toys friends have been bringing to make our stay at the hospital more comfortable. The little man is napping right now, so if we can get the bags packed and stowed away in the mean time, we can go home as soon as he wakes up!

Playng with Daddy

While Mommy and Kevin were at a birthday party, Daddy and Alan were having a grand time! He was so cheerful this morning, he even blew a kiss to one of the nurses.

Mini-treatment

Alan had his second chemotherapy treatment today - just the single drug vincristine, rather than the big trio he had last week, and he seemed to recover quickly. He also had an ultrasound, and was none to happy about it. The ultrasound tech asked Daddy if they should wait for him to calm down, to which he said the only way Alan was going to calm down was if the ultrasound tech left, so let's just get it done. We won't know the results until a doctor in radiology examines it and writes up. Our doc should have the results for us in the morning.

Daddy stayed with Alan in the hospital this afternoon while Mommy left the hospital for the first time since Alan was admitted to go to a birthday party with Kevin. He had fun but understandably clung to Mommy a lot. On the other hand, Alan was quite upset to see Mommy go after having her all to himself 24/7 for almost two weeks. Poor Daddy felt like chopped liver. If the tonight goes smoothly, we'll be home by Sunday night and the whole family will be together again!

Today's tidbits

Nothing big today... the other pathologists consulted agree on the diagnosis of infantile fibrosarcoma, so it's official. The doc was very pleased this morning when he saw Alan. He was playing around the crib with the new toy that Sarabelle and Sienna's mommy had brought for him. He was moving around quite a bit more, putting weight on his right leg and sitting up on his own.

When holding him, we can feel the lump on his right side getting hard. The doc says that is the scar tissue forming on the dying tumour. It's nice to be feeling some direct evidence that thing is being killed!

Chemotherapy #2 tomorrow, just the vincristine this time. If Alan gets through the night smoothly, we'll be home by Sunday evening. The doc is letting us stay until Monday if we feel the need, but he thinks Alan will be ready tomorrow. I'm still nervous because the chemo was so irritating to him last time, but of course that was the big VAC treatment. So we're splitting the difference, assuming everything goes well tomorrow.

But, the doc will be seeing us for office visits Monday, Wednesday and Friday for the next two weeks. A bit of a break from all the poking and prodding, but not a complete reprieve!

Crunchies!

While changing out the needles to access his port, Alan had about an hour or so free of IV lines! He got out of the crib and played on the mat, trying to stand again. His right leg is still very unsteady, but he enjoyed his freedom and was moving around quite a bit. Alan rolled around the mat with Kennedy and Logan's mommy while Mommy was enjoying a tuna roll that she brought. He eyed the food with such interest that we offered him his favourite Gerber Crunchies - the same thing he had been batting away for the last week. Hallelujah he's eating solids again! It was only a handful of Crunchies, some freeze-dried apple bits and a couple spoonfuls of yogurt, but it's the first solid food he's had since last Tuesday. Yay!

Not 100%

Alan has been doing so much better, laughing and playing. However, one thing has made perfectly clear that he is not 100% back to normal. While removing the needles to his port in order to change them, the charge nurse offered Alan his iPhone to play with in order to distract him. He showed him a "piano" app and a "drums" app, putting it within Alan's reach to touch the screen. At one point he even offered to let Alan hold it. Nothing. Is this possible? Our gadget happy boy not wanting to play with one of the latest smart phones?

Either Alan is a die-hard Palm enthusiast like his Mommy and Daddy (he's never turned down an opportunity to grab one of our Treos), the touch screen confused him (can it really be a cool gadget if it doesn't have buttons to push?) or he's just not all the way back to being our little monkey.

Things are picking up

Warning - Poopy talk in the first paragraph. Read at your peril or skip to the second paragraph!

We had a rather inauspicious start to the day. Mommy heard what she thought were juicy poops (there was, just not as much as she expected) and instead found that Alan had thrown up a little. It was to be expected, now that he is undergoing chemotherapy - it's just that he's never thrown up before. He was quite calm though, and was more upset by the process of cleaning him up.

The nurses were wonderful helping Mommy clean up, and Alan was quite intrigued by one of their name badges. This one had a blue jewelled pin on it - Alan has always loved playing with jewellery. He was so fascinated with playing with her badge we were able to take measurements on his legs and belly with out any fuss. This has been the most playful he's been in a week!

Seeing he was in such a good mood, when I put the balloons back by his crib, I flipped some of the curling ribbon over the edge to lay on the pillow. He started off slowly, just touching the ribbons while he sipped on his juice.



Pretty soon he was bouncing those balloons around like crazy. He was at it for a while until the doc came in to have a look at him. For the balloon play in action, scroll down to the video at the bottom of this post.




Everything still looks good. The doc reduced the frequency of his pain meds now that he's started to poop. By now, an increasing percentage of his pain is due to constipation rather than post-surgical healing or the tumour. No point in constipating him any further with high doses of morphine or codeine. We're on track to go home Monday!

Laughing boy

Alan laughed for the first time since his surgery last Thursday. Of course, silly Daddy hi-jinx were the reason - Daddy was whacking himself with the balloons from Auntie Jenn and Daddy's squadron.





Since he was in such a good mood, we gave him a much needed sponge bath and a fresh outfit. Daddy then proceeded bonk himself with the balloons again.



Big brother Kevin was there too, and played peek-a-boo with Daddy's help.

Today's new label, RTBT, has been blatantly stolen from our friend's blog. For the acronym-challenged, RTBT means Reasons To Be Thankful.

A slow day

Today will be a slow day. Someone came in during the wee hours of the morning to take an X-ray of Alan's chest and abdomen. The doctor had the results when he came to see us this morning - clear lungs and gas in his tummy. No wonder he's been so uncomfortable! But he's been pooping steadily, if in small doses, since yesterday afternoon. I'm glad I have a biohazard bin for all the dirty diapers!

We're starting to switch Alan's pain medication from IV morphine to Tylenol with codeine, presumably to prepare us to manage his pain while we're at home. We will have another ultrasound on Friday, and his second treatment of chemotherapy on Saturday.

We will probably be discharged on Monday, so we're working on getting the house cleaned for Alan's return. Time to start looking for extra babysitters too, since much of the time we will not want Alan to be at the drop-off daycare or the child center at the club. We are going to need to adjust to a new kind of normal now.

Finally asleep

Alan has been grunting his way through the day, trying to get comfortable. This evening, we took a break from the Baby Einstein marathon and I put The Sound of Music in the DVD player instead. He seems to enjoy it for a change. Who doesn't love Julie Andrews?

He's finally relaxed and asleep now. He actually slept through a whole set of vitals. But I know there's a big blowout coming!

Treatment and consquences

The chemotherapy certainly seems to be doing it's job. The swelling continues to go down, but there are other consequences to a dying tumour. As it dies, the tumour is consuming protein, so last night Alan got some albumen by IV. He also got another blood transfusion to support his hemoglobin levels so they don't drop dangerously low if the tumour starts a bleed. That was unpleasant since they require a blood pressure reading every hour while he is being transfused. He hates the BP cuff to begin with, and now they were doing it every hour while he was trying to sleep. Another effect of attacking the tumour is a rise in his uric acid levels, which is treated with a drug via IV.

Be warned, potty discussion ahead

Alan has been extremely cranky and irritable today because he is badly constipated. There have been a host of factors contributing to this: his gut has been shoved aside by the tumour, the chemotherapy drugs and morphine for his pain are very binding, and the anaesthesia and procedures last week have reduced his activity level.

We have tried various medications by mouth and IV, but we have had very small results. He has been uncomfortable for days, sometimes rolling onto his knees and waving his little bum in the air as he toots the gas away. Today, he has been grunting since 5:30 am, even as he naps. When the doctor came to see us this morning, he decided to order an enema. It won't be pleasant, but I know he will feel better afterwards. Thank goodness Daddy is finished for the day and on his way as we speak.

For your amusement - diaper humour

Diaper humour - proceed at your own risk!

A friend called to discuss a few things today, and asked me near the end of our conversation if I was serious about the biohazard diapers I had mentioned a few days ago. I told him that while, yes I do have to wear gloves and safely bag the diapers Alan produces during and for 48 hours after chemotherapy, the diapers I had placed in actual biohazard bags were standard baby diapers. The biohazard bags were merely the only appropriately sized bags available when we were in radiology and pre-op.

It reminded me of an amusing story though. When Alan had the bone scan on the third day, he was given a contrast about three hours before the scan. When we went down for the scan, the technician started it up, stopped it, then pulled Alan out. His diaper was full of the contrast and was interfering with the scan! We had to change his diaper before we proceeded with his test. After half an hour of having his bones scanned, Alan was tuckered out and we took the following picture.

Chemo for beginners

I have only a general idea of what chemotherapy is (drugs that kill cancer and create a market for wigs) so I asked the doc this afternoon to help me understand the process. He did so using an analogy, which is the best way I understand things, yay!

Think of the person as a factory, and the cancer as lines of production in that factory that have been hijacked to produce a tumour instead. The chemotherapy drugs are commandos that have been sent into destroy those lines of production. However, the first course of chemotherapy can only hit a certain stage of production, therefore we need subsequent courses of treatment, or commando raids, to hit the different stages.

The nurse has brought the road map for our first four cycles of treatment. We'll be going weekly, with every third week being a big treatment with all three drugs until the second week of June. The doctors will do scans before each big treatment and then an evaluation at the end of the final cycle. The surgeon won't be consulting until we have one or two scans showing no additional shrinkage of the tumour.

It sounds like a plan!

Stepping out

Jake and Sawyer's mommy had been by to visit this weekend, bringing some IV-friendly outfits that she and Bryce's mommy had bought for Alan. Unfortunately, we were unable to close the snaps around his leg because of the swelling.

The doc was so pleased with the reduction in swelling this morning that we tried one of the outfits today. It was still a little snug around the diaper since we're using the next size up to get around all the swelling, but at least he's out of the hospital gowns!



Now that he was all dressed up we took him out into the atrium for a little sunshine and a change of scene. Big brother Kevin was here to visit and they both looked out the windows at all the passing cars. Kevin has been missing Mommy, and even though this is his third visit in three days, he started crying as he said "bye bye". He misses his Mommy and she misses him.

Quick update

The doc came to check on Alan again this morning and was pleased by how he continues to improve. The swelling continues to decrease and he shows good kidney function - signs that the tumour is not pressing on things as badly as before.

The good news is that his hip bone where the ball and socket joint connects to the leg looks fine. The bone at the back of the hip sustained the damage from the tumour. We will have to wait and see how much of that bone remains before deciding what to do - perhaps a graft for reconstruction if the remaining bone isn't enough to support him until it regrows on it's own. Nobody has mentioned it yet, but I'm quite sure we'll have to do some physical therapy down the line.

Hopefully results from Houston will come in today, if only to dot all the i's and cross all the t's. Daddy and Kevin plan to visit again this afternoon. Daddy is going to bring a stroller so we can wheel Alan and his IV out to a sunny sitting area just outside the unit. He's been pretty good about it, but he has to be getting sick of this dim room. It has a nice sized window, but it's tucked in a narrow corner away from the crib. There may a whole sequence on the Sun in Baby Galileo, but it just isn't the same as the real thing.

Mister Cheeks sleeps some more

It has been another quiet day. Daddy bought big brother Kevin to visit Mommy, but because he was a little sick, he couldn't come into Alan's unit. So Daddy had some time with Alan while Kevin and Mommy went for a walk and hung out in the lobby reading, visiting with friends and blowing bubbles.

Between nice naps, Alan was showing a little more activity. His sleep definitely seems more restful now that he isn't in so much pain.


Alan enjoying a nice cup of milk.


He can multi-task now!


Being a baby is hard work.

Looking good so far

The doc just came in to check on Alan (in a pink golf shirt and a white "clean room" jump suit, but he *swears* he's not the Easter Bunny). It's too soon to really say how the treatment is going, but there are several encouraging signs: the swelling on his leg and other parts has come down, he's becoming active again, he needs pain medication less frequently and he has an appetite this morning. Barely 12 hours after the first treatment! There will be another dose of just one of the drugs next week, not the whole course that he got last night.

Charge on!

The return of the monkey

After the last bag of chemo was removed last night and he had a bit of respite from all the poking and assessment, Alan got a little feisty. He took his hospital gown off and was rolling around the crib, pushing to sit up, sometimes getting tangled up in the IV lines. We even got some of his signature babbling. It's the most active he's been since the surgery.

The doc came to check on him at 11 last night. Everything looks good so far, and he's interested to see how Alan will respond to the chemo.

After some more partying around the crib, Alan actually settled to sleep, such deep sleep that they were actually able to get a full set of vitals (BP included) with no fuss in the wee hours of the morning.

He's continuing to sleep, after having a nice amount of milk. That is such a big relief, since he only drank of couple of ounces of milk or water yesterday. We'll see if he feels like playing when he wakes up.

Rough evening

It's been a rough evening while Alan has been getting his first chemotherapy treatment. The drugs have been irritating him and he's so tired of being poked and prodded constantly. We haven't been able to get a BP all day because his crying and wailing throw the readings off. He tried to shake the sensor for measuring his pulse off his toe and batted away the stethoscope. Even taking a temperature has become a fight. Our nurse this evening commented on how mad he got just when he saw her enter the room.

I know we've said our boy is a fighter, but this isn't what we meant. They promise he'll get used to it over time, but I just don't see how.

We're rolling

The doc had another conversation with the hospital's pathologist and examined the slides again. They are quite certain that the tumour is infantile fibrosarcoma, so even though they sent the slides to colleagues at TCH and MD Anderson for additional confirmation, the doc would like to start Alan's chemotherapy today. Alan's getting very puffy, partly because of the IV fluids but also because the position and size of the tumour is impeding circulation. The pain is also becoming harder and harder to manage. Chemotherapy will help with all that.

It will be nice to get confirmation on Monday, but we're glad to be starting his treatment today.

Further research

Upon further Internet surfing, I found this fact sheet on Infantile Fibrosarcoma. Under the section on differential diagnosis, there was the following statement: Infantile fibrosarcoma may have round cell areas reminiscent of rhabdomyosarcoma. This may explain the earlier initial diagnosis of Embryonal Rhabdomyosarcoma from the needle biopsy's very small sample.

Tidbits from the pathologist

The doctor came from meeting with the pathologist with an update. They now think that Alan has Infantile Fibrosarcoma, an even rarer form of cancer (from 1982-1998 there were only 11 cases in infants).

The good news is that this tumour is usually treated with surgical resection, and it seems like there is little risk of the cancer spreading through the body or recurring after treatment. This is an even rarer form of tumour than the rhabdomyosarcoma though, so we are having trouble finding information. The anecdotal information we have found seems to be very encouraging.

In Alan's case, the doctor would still like to shrink the tumour with chemotherapy before surgery, depending how much of Alan's hip bone is left. If this tumour is confirmed though, Alan will not have to have radiation therapy.

The pathologist at TCH has seen the slides from Tuesday's needle biopsy, and is waiting to see the slides from yesterday's larger biopsy (why didn't they FedEx it?? we get a discount!!) and wants to consult with his colleagues at MD Anderson. The pathologists are also doing a genetic study on the tumour to confirm the identification. The pathologist at our hospital is on call this weekend, so if there any developments soon we should hear about them. But mostly likely we will not hear anything until Monday.

Chemotherapy for this tumour would be fairly generic, so depending on Alan's condition and how much of the hip bone is left, the doctor may consider starting treatments tomorrow. We'll know more when he assesses Alan's condition again.

Some good news

Some good news! Alan's bone marrow biopsy is clear so the cancer has not metastasized. We're holding at Stage 3 now. Thank goodness for small mercies!

However, we're still waiting on confirming the exact type of tumour. The initial sample looked like Rhabdomyosarcoma, but the markers in the larger sample look different. The hospital's pathologist is examining it right now and slides have been sent to Houston to a member of the rhabdomyosarcoma pathology committee for another opinion. We might get some news in the next two hours, otherwise we may not get confirmation and start chemotherapy until Monday.

Intellectually, we understand the tests take as long as they take, and we want them to be absolutely sure. But Alan's right leg is getting huge because of the reduced circulation caused by the tumour and his left leg is starting to get puffy. If his life or functions are threatened, the doctors can start a more generalized mix of drugs that have been shown to shrink solid tumours, but the toxic effects of chemotherapy are so great that they only want to do a less than optimum treatment as a last resort.

So we continue to wait. Alan continues to sleep, missing a visit by Geoffrey (of Toys'R'Us fame) and the Easter Bunny to the unit.

Quiet morning

Alan has been sleeping a lot, punctuated by periods of upset. We're trying to keep on top of his pain management so it never gets too bad while he's recovering from all the surgery. Our nurse found a rocker-recliner for us last night so I've been rocking and singing to him. He's been so wiggly and independent the last six months that I've missed our cuddling time. Always looking for that silver lining!

He continues to sleep this morning while we wait to hear from the doctors. In the mean time we've rearranged to hospital room for a long term stay and started a load of laundry. Tick tock tick tock...

Day 4 thoughts

The wacky thing, it's day 4, but since we weren't admitted to the hospital until Monday evening, we've been here less than 100 hours. And yet everything is now turned upside down. 100 hours ago we were concerned about getting Alan an appointment for hernia surgery before it got too painful. Now we would give anything to deal with just a hernia.

We've been talking to a lot of people from the hospital today. Child Life advocates explaining the port and life with chemotherapy. The hospital chaplain came by to introduce herself and offer her support. The nurse advocate came by with a binder which is basically a primer and organizer for families of children fighting cancer. She'll help us with educational materials once we confirm the type of tumour. And there's still the case manager and social worker worker to come.

I've had a few amusing photos with a wet diaper in the background, encased in a biohazard baggie. We need to keep Alan's diapers for the nurses to weigh so they can track his fluid intake and output. When I change his diaper in another part of the hospital, they don't have the plain bags so they give me a biohazard bag instead. Now I could make a joke about toddler poop, but the thing is, while he's on chemotherapy and for 48 hours after, I'm going to have to change his diapers every two hours with gloves and dispose carefully. That's because the chemotherapy drugs, after circulating through his body, will be eliminated into his diaper along with all the usual.

Just one of the ways life is going to change. We'll figure out more of the changes as we go along.

Hands free

After a couple of hours delay, Alan finally went into surgery for a bone marrow biopsy, medical port installation, and a biopsy for a larger section of the tumour for more extensive testing. The surgeon explained that the first biopsy, done through a needle, could only collect a small amount of cells, and ran the risk of collecting "dead" tumour cells. This morning he collected several cubic centimeters of the tumour, giving the pathologists much more to work with.

When we saw him in recovery around 1 PM, he was sleeping rather noisily on his side, with a mask blowing oxygen. He was beat.



We returned to his room around 2:15 and after a nice heavy nap, Alan woke up to drink some juice and water. Now he has the port, they were able to take out the IV and splint on his left hand. Free at last!

Waiting

We're waiting to get into Alan's surgery. Not only will we be putting in the medical port and doing a bone marrow biopsy, now we are also going to do a more extensive biopsy of the tumour. One of the pathologists thought that it might not be the rhabdomyosarcoma and wanted a larger sample to test.

It doesn't change the form of treatment, but will affect the mix of drugs they use if it is a different type of tumour. We won't know whether Alan's chances or better, worse or the same until we get the results. So we'll be waiting for those results hopefully today.

One thing that we aren't waiting for (and this might be TMI for some people, so continue reading at your own peril) is for Alan to have a bowel movement. He hadn't had one since Monday morning at home, and we were starting to get a little concerned. A little milk of mag in the wee hours of the morning and we had not one, but two poopy diapers later on. It's amazing how pleased parents of a baby, especially a sick one, can be by something so simple.

Diagnosis Part 2

We just had a wonderful chat with Alan's primary oncologist and feel a bit better. First off, the results from his bone scan today show no sign of cancer, so that's one more strike against metastasizing cancer. Once we get an all-clear from the bone marrow biopsy tomorrow we can put the spectre metastasizing cancer and a Stage 4 sarcoma behind us.

His doctor gave us some more details. The site of origin was in his iliacus muscle (neither a favourable nor an unfavourable site - right down the middle in terms of risk factor.) There are only 150 cases a year of Rhabdomyosarcoma in children Alan's age. The 10 cm tumour in Alan is made up of a billion cells. At that size, it is a Stage 3 tumour. By comparison, a Stage 2 tumour would be about 5 cm.

We start chemotherapy on Friday, which will continue for 5 days. We anticipate that Alan will be staying in the hospital for the three weeks following to monitor his recovery until the second course of chemotherapy.

In the meantime, we appreciate all the prayers, kind thoughts and support that have come our way. We are truly grateful.

Diagnosis

We have a diagnosis now, and it isn't good news though it could (and might) be worse. Alan has Embryonal Rhabdomyosarcoma, a very rare form of cancer (about 3% of childhood cancers). This is the more treatable form of Rhabdomyosarcoma, so we are greatful for that. The site of the tumour also makes the chances of success more favourable, so we are grateful for that as well.

He goes into surgery tomorrow morning to get a medical port (for future treatment and evaluation) and a bone marrow biopsy. The results of tomorrow's biopsy and today's bone scan will tell us whether or not the cancer has metastasized, which would be even more dire news. Because the fairly normal results of the blood tests Monday night and his general liveliness, we are fairly encouraged this is not the case. The recent tests have also shown that his lungs, liver and brain are clear. We won't know for sure until tomorrow at the earliest though.

Treatment will be a combination of chemotherapy, radiation and surgery.

Articles on rhabdomyosarcoma from Wikipedia, the Sarcoma Learning Center, and St. Jude's Children's Research Hospital.

We've got a fighter

Even with a destroyed right hip bone and a heavy splint on his left hand, Alan is determined to maintain his reputation as a monkey. He played a vigorous game of "I'm laughing with you" with visitors last night, and this morning he was all over the toys that the hospital's volunteer grandmother brought for him.



Our boys love anything fishy, so it's no surprise that Alan stood up to check out this aquarium.



With a mat on the floor, Alan tried to stand and walk, played with a toy piano, and crawled all over Mount Daddy. With all this activity, he's nice and tired. Hopefully, this will mean he'll lie still for the bone scan this afternoon.

Some initial results

I met Alan's primary oncologist this morning and he gave us a preliminary progress report on the test results. The initial examination of the biopsy showed that the tumour is made up mostly of muscle and connective tissue, falling into the class of small blue round cell tumours. They will run immunostaining tests next to further narrow down the specific type of tumour. This will take another day or so, since they will be sending the slides to several different pathologists to independently determine the type of tumour. Apparently, the differences between the tumours in that class are very subtle, so they want to be sure.

Intellectually, we know that an accurate diagnosis is better than a fast one, but the primal mama and papa bears in us are saying "Kill!"

The more encouraging news is that because of Alan's age, his hip bone is made up mostly of cartilage, so when this tumour is beat, there is a good chance the bone will grow back. The oncology doc will take over all of Alan's health care for now - no more taking him to the primary care pediatrician, pediatric GI, or ER. One stop health care shopping - good thing we both really like him! As he says, "Charge on!" - we're stopping at nothing less than a cure.

Day 2 update

We had a chat with Alan's doctor and he thinks we'll have the test results from the biopsy by tomorrow. As best he can figure, the tumour has been growing for about a month which, in retrospect, sounds about right. He's seen tumours grow to this size in just two days, so we're lucky to have a slow growing one. Other good news is that it isn't interfering with his spine.

Tomorrow we should be consulting with the surgeon who will put the port in for chemotherapy and discuss a bone marrow biopsy. In the meantime, we continue the waiting game.

Do I hear an echo?

In the day of continuing tests, Alan had an echocardiogram. He was not happy to be forced to lie down, so eventually Daddy held him up. Ah, much better! Now at least he was mildly curious about the chilly ultrasound goo and wand, and the big screen with all those strange pictures.

In recovery

Alan went in for his MRI, another CAT scan and biopsy this morning. Because he would have to be still for 35-40 minutes for the MRI, he was put under general anesthesia for all the tests. We were able to see him around 11.

Alan was understandably cranky - after all, he hadn't had anything to eat or drink since before midnight. But when he relaxed enough to lie back for a while, he became mesmerized by the beep and trace of his monitor. That's our boy, he just loves the beeping gadgets!

First night reflections

We've talked with the doctor about today's test results and have seen the CAT scan. This tumour is massive! Beside wrecking his right hip bone it's also shoved his intestines to one side and crowded his right kidney. His right leg is noticebly puffier than the left because of the pressure from the tumour, but it's still a healthy pink with wiggly toes so nothing to worry about for now. The other good news is that the lab results from his blood tests have come back fairly normal.

With all of that, it's amazing how active and lively Alan is. I know it's futile to think of what if's, but it's hard not to wonder why we didn't notice anything wrong before. Alan started walking with a slight limp a month ago, and was certainly irritable, but between ear infections, at least 3 new teeth coming in, entire days spent travelling to and from my dad's funeral in Canada, and a growth spurt throwing him off balance, there were always more plausible explanations than a tumour.

Mr. Cheeks Goes to the Hospital

Alan is in the hospital right now. We thought he had a hernia (like Kevin had 2 years ago, not a big deal) but when his doctor examined him today he noticed a hard mass not consistent with a hernia on his right hip/abdomen area. He sent Alan to the children's hospital for an ultrasound, and based on those results ordered an x-ray and CAT scan.

Alan has a tumour on his right hip, and it may have destroyed his right hip bone. Tomorrow, he will have an MRI, another CAT scan and a biopsy so we can determine what the tumour is. We won't know exactly what it is until we get the biopsy results, possible Wednesday or Thursday and probably won't be able to determine a course of treatment and start until Friday.

Alan will be in the hospital indefinitely at this point. A blog seems a good a way as any to keep from obsessively searching the internet for informtion when we don't even have a diagnosis yet. (The doctor caught me with the laptop.)