Rest in Peace Auntie Janna

You may remember the lemonade stand that our playgroup put on for Alan back in May - Jaz and Em got the idea from their cousin Dougal, whose beloved Auntie Janna was fighting Non-Hodgkin Lymphoma. Their mommy was a Relay For Life team mate, walking in Janna's honour. I'm sorry to share that Auntie Janna, our inspiration, passed away last week and the memorial celebrating her life takes place tomorrow. Please extend your prayers to her family, to give them strength during this difficult time.

Ever since we got Alan's diagnosis, we have become so much more aware of how often cancer touches our life and the lives of loved ones around us. We're sad to lose a fellow traveller.

As for Alan, he has enjoyed being home. He slept in late and had a nice long nap - catching up on all that interrupted sleep in the hospital. He had fun in the family room creating toy carnage, and keeping up with his big brother Kevin. The two boys had a great time in the bouquet of balloons sent by Baby Liam and Alan was enjoying his freedom to move and be active. He stood, free of support, several times and for the first time since the tumor knocked him down, he tried to take a step a few times.


Boys and their balloons


Look at him stand!

You know you've been in the hospital too long...

We're finally home after another long stay at the hospital. Doc P came in to our room long enough to toss us out of the hospital. We don't even need to go back to the office until Monday - freedom indeed! We will have almost a month without treatments - no more chemo until we get back from our trip to visit family. Doc P ordered "Have fun!" and we always do what the doctor says!

Alan loved being free and having his big brother to play with again. He followed him around, played with what Kevin was playing with, and even tried the "Ram and Roll" while Kevin was chilling out on the family room floor. He cruised from chair to sofa to coffee table to window and back. A couple of times, he even tried to stand! We're really going to have to keep an eye on him.

We'll leave you with the following thoughts...

You know you've been in the hospital too long when

1. big brother Kevin says "We're home!" when arriving at the HEM/ONC ward.
2. the staff are starting to expect a daily hug and kiss from Kevin (that little charmer!).
3. the so-called mattress of the arm chair pull-out bed is starting to feel comfortable.
4. you start to get a feel for the rotation of the nurses' schedules.
   
5. you start to memorize the wacky channel line-up on the hospital TV system.
   
6. Alan is actually starting to put up with the poking and prodding when taking his vitals.
7. you know more about running the feeding pump than some of the nurses.
8. you start making friends in the neighbouring Bone Marrow Transplant ward.
   
9. you know how to silence every alarm in the room so it doesn't wake up a sleeping baby.
10. the tires on your car start to lose pressure from sitting in the hospital parking garage.
    

Bye bye port

07/28 1030
ANC 8600

Doc P is back after a month off visiting with family. He showed up at the hospital bright and early, but not as early as the X-ray tech who came to our room to take a chest x-ray of Alan. Last night both of Alan's ports had become clogged, and the TPA didn't help. They finally left Alan alone to sleep, and in the morning, Doc P decided to take his port out. He thinks that bacteria is caught in the port with with the clotted blood. Some of it was probably dislodged on Sunday when they flushed the port in preparation for chemotherapy, leading to our shivering incident on Sunday afternoon. Best to be safe and take it out. We'll go on our family trip port-free, and get a new one before the last course of chemotherapy.

So, this morning they took the two needles out of his port and put an IV line into his left hand. Unfortunately, that means we're back to the wrapped board on his hand, but it should only be for another day. Doc R, the surgeon who put the port in and biopsied his tumor back in April and who will eventually remove the tumor, took the port out this afternoon. He took a culture around the site of the port and from the catheter of the port, but reported that the site seemed to be healthy. We talked about a future date for the new port and about the removal of the tumor. Alan was only in the OR for half an hour, and Doc R said the procedure itself would only take ten minutes. Alan came through just fine, having enough energy to hide under his blanket from the bright light in the recovery room. He spent the rest of the day quietly in his crib, not napping, but not very active either. Hopefully it will be an uneventful night for once and he (and Mommy!) can get some sleep.

Quiet

07/27 0440
ANC 4400

Today was very quiet. Alan was recovering from yesterday's crisis - no more chemo, just lots of fluids and antibiotics. There has been no growth in the cultures yet, but it could take up to a week. They'll probably let us go home after 48 hours if he continues to be stable though.

Because of the pulse/ox monitor on his toe, he wasn't able to play outside of the crib today, which wasn't a big deal because he ended up having a four hour nap! (it was even during nap time!) He woke up to watch a helicopter land and a new toy and book! A family came to the HEM/ONC ward today with a cart full of presents. A young family member had died of cancer (not sure of the exact details) and one of the kids in the family wanted to bring presents to the kids in the hospital for her birthday instead of having a party. I was really touched and also reminded that things could be a lot worse.


"Hmmm, I wonder what I can stick in this alligator's mouth?"

Hiccup

07/26 0450
ANC 7400

We had just started the last drug (Cyclophosphimade) of the VAC treatment when all of a sudden, Alan started getting tremors. Alan's nurse called the charge nurse and the nursing staff sprung into action. The charge nurse was concerned it was a seizure at first, but as they worked on him it looked more like a reaction. They gave him some Benedryl and Tylenol and stopped all the medications (he was also getting Ativan and Mesna). Doc A got there incredibly fast (does he sleep here on the weekends or does he just have access to a teleporter?) but even so Alan's tremors and upset had eased by the time he arrived.

With seizure ruled out, the charge nurse and doc were considering either a reaction to one of the meds (still possible even though he's had all of them without any reaction before) or bacteria hitting his system, possibly from one of his ports. The doc favours the bacteria theory and cultures have been taken from both lines and sent to the lab. His temperature spiked to 102 at one point, so the fever could have caused the shakes. Now we just have to wait and see.

The rational part of my brain was amazed and impressed by the half dozen RNs coming together and working like a well-oiled machine. The emotional part of me was focused on comforting Alan in the middle of a very intense half hour with information, drugs and equipment flying back and forth while they stabilized his condition. I just stayed by Alan with my hand at his back while all this was going on and concentrated on his mood, so the import of all this didn't hit me until things had calmed down and I saw the form that one of the nurses was making notes on - the Critical Event Flowsheet. Until I saw the title of that form, I didn't know enough to be scared, and now that I did, the urgent phase had passed.

Things are quiet now. Alan is quietly playing, though he ought to be asleep, the little stinker! He's had Ativan and Benedryl... his nurse is amazed that not only is he still awake, he was trying to stand several times. He still has a fever though, so hopefully he will fall asleep when the Tylenol finishes the job on that. Unfortunately, this means we're in the hospital for at least another day, more if it is another infection. Stay tuned.

Wild boy

07/25 0425
ANC 3000

Alan was an active boy today. This morning he played on the mat surrounded by toys again. Doc A came to check on him down there, and the two of them played "Head Butt". Alan thought it was hilarious! Back in the crib later, he did the "Bounce and Laugh" and a modified "Ram and Roll" with the nurse and PCA.

Grandma arrived from Florida to help us out yesterday, and she was happy to see Alan looking so jolly. She loved how excited Alan became when he saw his big brother Kevin - laughing, jumping and bouncing. Then she and Mommy took Kevin on an outing while Daddy hung out with Alan on the play mat. Alan had a great time climbing Mount Daddy and once again, refused to nap. As on the other days, he would nod off sitting up or even lie down quietly, then BOING! he would be up and bouncing off the walls again. It was like that bumper sticker "Can't Sleep, Clowns Will Eat Me!". He finally crashed around 6:30 - here's hoping he's down for the night and that it's not just a really late nap!


Alan plays with his own stethoscope

Good CAT scan news!

The CAT scan results are great! The tumor has shrunk significantly in less than 3 weeks - down to 6.4 x 4.5 cm, compared to 11.1 x 9.5 cm on April 6 and 6.2 x 6.5 x 8.1 cm on July 7. There are also signs of ossification - some of that may be the dead parts of the tumor calcifying, but there is definitely some regrowth of Alan's hip bone.

Doc A was positively giddy with the results - he kept on calling the nurses over to see the comparison between the April 6 and July 25 CAT scans. They were all pretty amazed at the difference, and I think they had a feeling of vindication, that their work contributed to this result and others like it. Doc A was particularly pleased because it confirmed his belief in the efficacy of Irinotecan in shrinking this type of tumor. He has had success using Irinotecan to fight recurrences of Rhabdomyosarcoma, so it shouldn't be too surprising that is working well against the Infantile Fibrosarcoma since there are similarities between the two.

Here are some side by side comparisons of the April 6 and July 24 CAT scans.







We had forgotten how horrifying that first CAT scan was, watching the tumor take up more and more of Alan's abdomen as the cross section view moved down his torso. This was the first time we had seen it again since that first night in the hospital. To see it running next to today's scan really brought home how much progress we've made in the last three and a half months and 5 courses of chemotherapy.

With such great results from the Irinotecan and Adriamycin, Doc A thinks we'll be ready to consider surgery after the next dose, so he plans to present Alan's case to the Tumor Board in September after two more courses of chemotherapy (VAC this weekend and Irinotecan/Adriamycin at the end of August) and one more CAT scan. Since this is the first time he's brought up surgery since we first started discussing Alan's treatment (as opposed to us asking them "Are we there yet? Are we there yet? Are we there yet?"), we were quite encouraged! Please pray for the tumor to continue to shrink so we can finally get it out of him. What a wonderful second birthday present that would be for Alan!

Another CAT scan

07/24 0815
ANC 2500

We were woken up bright and early this morning to go down to Radiology for another CAT scan. We weren't sure last night when we would be taken down, but we were hoping it would be early so that Alan could start eating again. Well, the anesthesiologist came up himself to get us. This was the first time we had met Doc K - all the other times we had Doc B and we were beginning to think she was the only pediatric anesthesiologist in the hospital! Well, things were running slow down in Radiology this morning, and Doc K was getting impatient to get working, so he came up to get us himself. Quite the perk to be transported by a doctor!

The scan went quickly - Mommy barely had time to go back to the room to change out of her pjs and return Alan's wet diaper to the 4th floor nurses before going to the post-anesthesia recovery room (once again, Mommy was roaming the halls of the hospital with a diaper in a biohazard bag - Doc K was in such a rush to get back to Radiology we didn't time to change Alan before heading down). We were back upstairs in no time. So quickly, in fact, that Alan didn't get much sleep after waking up from the procedure (when you're inpatient, they move you out of recovery quickly, and Alan woke up while being moved back into his room). We are still waiting to go over the results with the doc, but the nurse hinted that they were very good!

Alan spent the rest of the morning playing on the mat. The Volunteer Grandma brought him more toys until he was surrounded!

Dora!

07/23 0330
ANC 9100

Alan got a special visitor today, Dora the Explorer! She had made an appearance in the Children's ER Lobby, and was making a tour through the rooms of the kids who couldn't make it down. Alan refuses to wear a mask so he is stuck in his room. Alan had some new toys from the folks at Child Life, including a piano, which he took great delight in playing for Dora.

He's been standing more and more! Even though most of the weight is still on his good leg, it's great that he's making the effort.

Visitors

07/22 0500
ANC 20100

Daddy and Kevin couldn't make it to the hospital today, so we were very happy to have Auntie Karen and then later Auntie Carolyn visit. Alan was especially charming, which was nice. Here in the hospital, his nap schedule has been thrown completely out the window. Some days he doesn't nap at all, others he naps late in the afternoon into the early evening, meaning he's still bouncing off the walls at 11 PM. He's been getting cranky in the afternoons and letting everyone on the floor know it!

Just a quick visit from the doc today, who was happy with how Alan looked. The counts are going up, and if they continue to do well now that we're done with the Neupogen, we'll have chemotherapy this weekend so we can go home Monday morning.

Ham!

07/21 0445
ANC 8600

Alan was driving Mommy crazy because he wouldn't nap today. By the time he finally fell asleep around 8 PM, he was mighty cranky! On the other hand, he had a few bites of chicken at lunch, and a LOT of ham for dinner, on top of the ever-favourite Cheerios.

Not much else today except that Doc A is happy with how his blood counts are coming back up. Today was our last day on Neupogen. The doc is planning on a CAT scan on Friday, with chemotherapy on Sunday. He keeps feeling Alan's right hip, and I think the curiosity is really getting to him, which is why he's scheduling a scan now when we weren't supposed to get another one until after the second course of Irinotecan and Adriamycin.

Kevin was well enough to come up to Alan's room today, which was fun for the boys as they got to see another helicopter take off. They sure love their flying machines, just like Daddy!

Infection update

07/20 0330
ANC 3000

The more detailed blood culture is back - it's Enterobacter clocae, which responds well to Cefepime, the antibiotic that the doc already had Alan on. It's nice to have confirmation that we're on the right track.

Big brother Kevin and Daddy came to visit this morning, but Kevin had to stay out in the lobby because he had the sniffles. Mommy and Daddy tag teamed to spend time with the boys. Mommy and Kevin discovered fish in an aquarium in the new Children's ER while Daddy and Alan made each other laugh. After very late nap, Alan had some broccoli and more Cheerios for dinner!

Feeling better

07/19 0415
ANC 700

After a couple of days on antibiotics, Alan is already feeling better. He was been sitting up and playing, so the doc took him down to just one antibiotic. He's been bright eyed and bushy-tailed today, standing and cruising around the crib. He even pushed Daddy aside so he could see a helicopter landing (our new room, seahorses!, has an even better view of the hospital helicopter pad as well being right over the ambulance bay).

Alan has also been eating a little bit today - mostly Cheerios or Cheerio-sized pieces of bread and meat. He hasn't tolerated his feeds well though, so we're reducing the rate again to give his tummy time to recover.

We discussed Alan's future treatments with the doc. Since we will be travelling to visit family in August, Alan will get another treatment of VAC and a CAT scan on the last day in the hospital. He's recovered from VAC pretty quickly, so we should be fine for the trip. As for the scan, the doc thought he felt his iliac bone today and is curious how it is recovering. He won't get the second round of Irinotecan and Adriamycin until we get back. Schedule-wise, that makes everything easier for a change!

10 Days

07/18 0400
ANC 200

Preliminary results from yesterday's blood culture are back and the news is that Alan has an infection. It seems an ulcer formed in his gut, and with his weakened immune system, his own bacteria has gone into his blood and caused an infection. This wasn't from exposure to anyone or anything - just one of those things that can happen with chemotherapy.

We will be spending 10 days in the hospital for IV antibiotics. The silver lining is that since his medical port will be accessed for the meds and fluids, he can get the G-CSF via IV - no more Neupogen shots!

Things for the family will be tricky over the next two weeks - Daddy has a trip for work while Mommy and Alan are still in the hospital. Luckily, Grandma is coming out from Florida to help keep an eye on Kevin. We're so thankful that she was able to come out at such short notice!

Office Visit 7/17 - Boomerang

07/17 1830
ANC <100

Alan's red and white counts are low, and he's been irritable and unhappy the last few days. We've also seen him shaking - almost like chills without the fever. The doc wasn't happy with what he saw so we're back in the hospital for a blood transfusion, antibiotics and more tests.

X-rays showed his chest is clear but there is considerable gas in his system. That makes sense, since he's been happier after each toot. We've had a bit of a fever tonight too, but it responded to the Tylenol. The doc came by after the blood transfusion, and was much happier with how Alan looked. We'll see how he is in the morning. Now if he would just fall asleep!

Finally home

07/13 0430
ANC 10900

After almost 6 days, 4 loads of laundry, countless needle sticks and blood pressure cuffs, we're finally back home! We were hoping to be able to leave this morning, but Alan was asleep when Doc A came to check on him, and he wanted to see Alan in action after he'd had the tube put back in. His counts were great (thanks to the Neupogen he got by IV last night), but there was the question of how well he would tolerate his feeds.

After a long night of monkeying around (he didn't fall asleep until 11:30), Alan slept in for a while, then we were down on the mat for some playtime. He had no interest in the scrambled eggs or sausage, but started hoovering the Cheerios! He must have eaten a quarter cup of Cheerios by the time they called us down to Radiology for his new tube. As expected, he was not happy with the procedure - he must have recognized the room because he was wailing when we went in.

By the time we got back to our room around 1 pm, he was tired! He napped through his first bolus and was pretty perky when he woke up in time for Daddy and Kevin to arrive for the rest of the afternoon. We didn't think he'd still be interested in eating after having the tube back in, but when he took some food out of Kevin's hand, we figured we offer him whatever Kevin was eating. He ended up having a couple tablespoons of broccoli (ya, our boys love broccoli!), bread and some more Cheerios. Yay!

Doc A was very pleased with how well Alan was moving and sent us home. We don't even have to go to the office until Friday since Daddy will pick up the Neupogen shots for us tomorrow! It's so nice to finally be home!

One more day

07/12 0345
ANC 3000

Well, we were so close! Doc A looked him over and actually said "Go home!", and then Alan vomited all over him, hard. In fact, hard enough to vomit up his NJ tube. *sigh* Well, 180 degree turn, we were staying for another 24 hours for IV fluids, more drugs (anti-nausea and antacids) and a new tube Monday morning. Better safe than sorry, and we had read that side effects of chemo can be cumulative. As much as we wanted to come home, it was better to keep Alan close and under observation for now.

So, instead of coming on his own to pick us up, Daddy brought Kevin with him to hang out for another day (thank you for being on stand by Renee!). Mommy and Kevin went on another outing while Daddy spent time with Alan, and when they got back, Mommy helped Kevin decorate a Thank You card for the staff here at the HEM/ONC floor.

Kevin also got to see a helicopter land and take off a few times today,



and later, got to hang out in the crib with Alan. They watched Baby Einstein together, and Alan was tickled to have his big brother close enough to harass again! Hopefully, we'll be home tomorrow and the boys can play again on their own turf.

Another load of laundry

Daddy blows bubbles for Alan

Well, thanks to the ace bandage wrapped around his chest, Alan managed a whole day without dislodging a needle! However, Mommy had a third straight morning of doing laundry. IV fluids plus Pediasure through a feeding tube equals huge, massive diapers. We try to keep him changed but sometimes, when he's sleeping so soundly, it just gets to be too much. Because of the chemotherapy, we need to wash his clothes promptly, and of course all the bedding has to be changed. Not a good thing for water conservation!

We're trying size 5 diapers tonight. Hopefully that will help! The chemotherapy drugs have been fully dispensed and Alan is down to just the post-hydration fluids. We hope to be home for lunch tomorrow!

Another day, another needle

Alan had a good day - he played on the mat in the morning, had a nice nap, and took a ride in a wagon. We weren't able to leave the unit because he refused to wear a mask, but he still enjoyed getting out of the hospital room and having a change of scenery.

Daddy and big brother Kevin came to hang out late in the afternoon, and we took another trip in the wagon with Kevin riding too. It was a nice quiet time. However, just as Daddy and Kevin were getting ready to go home for the night, the port receiving the chemotherapy stopped flowing. It seems the top needle came out this time. The needle had to be removed then a new one inserted so they could hep-lock the port. They were going to run both the fluids and chemotherapy into the lower port, but Alan pulled it out before they could stop him. They had to re-access both ports to test and hep-lock and ended up running the fluids and chemo in the top port because it had better flow. Over an hour and countless needle sticks later, Alan was down to one new needle and an ace bandage around his chest to be sure it stayed in. Poor Alan, and poor Daddy who stayed with him throughout the process. Mommy had taken Kevin for a walk and some colouring in the family room while all this was going on.

When they were finally done, Alan fell asleep after a little Baby Einstein. Poor little man! We'll see tomorrow if we can go an entire day without a dislodged needle.

Hanging at the hospital

Alan has been handling the new chemotherapy well - the warned about diarrhea and nausea haven't cropped up yet. The only complication today was another pulled out needle from his port, luckily not the one administering the chemotherapy. It's not surprising since he was so active today. He was in a much better mood this morning after a good night's sleep (at least as good as it gets in the hospital). He was cruising around the crib and discovering the joys of tossing toys onto a linoleum floor. The clank and bounce on linoleum is so much more entertaining than on carpet.



Our room has a good view of the hospital's helicopter pad. The windows must be well-insulated, because one landed and then later took off without me hearing a thing. We have seen at least three helicopters since Alan's been admitted.

Alan has just started a 24-hour dose of the Adriamycin. Yesterday's dose was given over a 20-hour period. By stretching out the drug over a longer period, Doc A wants to mitigate any harmful effect it might have on Alan's heart. Because the chemotherapy started so late yesterday, we'll probably be going home Saturday rather than Friday. Still, it should be our shortest hospital visit yet!

Back in the hospital for chemotherapy

07/08 1215
ANC 4900

Alan gets a short reprieve from baby prison and decides to climb all over Daddy

We're back at the HEM-ONC ward for Alan's next round of chemotherapy. The two new drugs will be administered by IV over the next few days. This time, he will be getting Adriamycin and Irinotecan. Because the Adriamycin can be hard on his heart, he got an echocardiogram (an ultrasound for his heart) before starting treatment. We're waiting for the doc to go over the echocardiogram results before they start giving him the drugs.

Alan was not happy when we rolled into the HEM-ONC ward. Once we went through the doors into the main desk area, he started wailing. This was not a fun place. This time, we got a room with whales painted on the walls - orcas, belugas and more. He didn't care, he was back in baby prison. He eventually calmed down, but would get noisy again whenever anyone in scrubs walked into the room. We had a heck of a time getting the echocardiogram because he was wiggling and yelling.


"Oooh, can I get out of here?"

We've brought a supply of toys, DVDs, and of course the PSP full of Baby Einstein to amuse him. Jaime from Child Life also brought a mat so he could get out of the crib and play on the floor a bit. She also has a stash of more toys if he starts getting bored. Right now, we're just hoping he'll fall asleep because he refused to nap today!

Office visit 7/8 and MRI results

07/08
ANC 1749

Good blood count today and the MRI results are great! The tumor has decreased in size almost 50% from the time of diagnosis (from 11.1 x 9.5 cm to 6.2 x 6.5 x 8.1 cm) and has retreated from his spine. It's still "involved" (that's radiologist-speak) with his right pelvic bone, but Doc A was very happy with what he saw. After these two upcoming courses of chemotherapy we'll get a CAT scan which will give us a better view of the bone. The MRI also showed some atrophy in the muscles of his lower right extremities, so Doc A would like Alan to start some physical therapy.

They've accessed both of Alan's ports and now we're off to the hospital for chemotherapy.

MRI number 2

Alan sleeping off the anesthesia

We had to show in Pediatric Radiology at 8:30 this morning for a 10:00 am MRI. Unfortunately, the anesthesiologist was held up with an emergency, so we waited almost 5 hours before they finally took him in to the MRI. They put him under with the gas Sevo, and he did not like the mask at all. He had already been cranky and crying for the last hour and a half. The nurses and anesthesiologist were all commenting how strong he was - he got several good kicks at one of the nurse's chest until she managed to shift over a bit. One good thing about him crying so hard, he was taking in the gas well and soon drifted off. One more kiss, and Mommy was sent off to the post-surgical waiting room.

Alan came up to the recovery room shortly after two. They gave him half an hour to sleep off the anesthesia, taking vitals, and then tried to get him to drink some clear liquids - Lemon Lime Gatorade since he hasn't wanted anything sweet since we started chemotherapy. One of the side effects of the anesthesia was irritability, and it showed. On top of that, the gas could make him, well, gassy, so he was tooting away between wails. The nurse finally let us go home, and he was happy as soon as we started heading back to the car. Little did he know that we'll be back in less than 24 hours! Oh well, let him enjoy the evening.

Back to radiology

Alan's feeding tube has been giving us some resistance, and this morning, it became completely blocked. So we're back at Pediatric Radiology. This tube has been in for a while, so instead of trying to clear it out, we are getting a new one on the other side. Alan was pretty content until we actually got to the exam room. He's been here several times, and it's never been fun, and so he started wailing away. The fact that his nap was long overdue didn't help.

So far he's tolerating the new tube and the increased rate of his feedings. This new tube is also an N-J tube, so hopefully he will continue to handle the feeds.

Office visit 7/1

07/01 10:33
ANC 4321

Counts today and our last scheduled dose of Vincristine. Doc P is still worried about Alan's daily calorie intake and laid out the numbers for us. A child his age needs 100 calories/kilogram/day. With the toll that the tumor and chemotherapy is taking on him, that number needs to be supplemented by 25%. So, Alan is currently 12 kilograms - 1200+300 = 1500 calories a day. With the Pediasure at approximately a calorie per ml, he needs to take in 1500 ml, and we've been managing only a little over 1000. We'll be bumping up the rate of his night feeds to try and make up the difference.

But for now, we're done for the week! We don't need to go back to the office until Monday. Hurray for a long weekend!