Office Visit 6/29

06/29 10:33
ANC 41865

No problem with the white counts today, so we're off the Neupogen! We had increased the rate of Alan's feedings over the weekend, so we were quite happy to see he had gained some weight today.

We talked with Doc A about what will happen after next Tuesday's MRI. The new regimen of Irinotecan and Adriamycin requires that we stay in the hospital 3-4 days. So, next Wednesday we'll go to the office to go over the results of the MRI then head over to the Pediatric HEM-ONC ward to start his new treatment. We will only have two courses of this combination since the Adriamycin can be hard on his heart. These treatments will be at three week intervals, though we will continue to visit the doctor's office for counts and any necessary supporting treatments in the intervening weeks.

We asked whether we would be doing another bone scan in the future, to get a good look at how his pelvic bone was recovering and if that would tell us if there was any cancer cells on the bone. We will be getting either another bone scan or a PET scan eventually, but not quite yet. These nuclear scans show any activity in the bone, though not specifically what kind, so we'd need additional testing to determine if there are any cancer cells remaining on his pelvis. For now, we'll just be doing the MRI.

Office Visit 6/26

06/26 10:45
ANC 1189

The whistling sound you hear is that of Alan's white blood cell count plummeting. We were expecting it though, and it's still a decent level. Nonetheless, the Neupogen shots continue over the weekend.

Alan has been weighing the same at each visit this week, give or take an ounce. He's been getting about 1000 calories a day for the last couple of weeks, and though he has gained almost three pounds since the feeding tube went back in, it's mostly bounce back weight gain to make up for everything he had lost while he was tube-free. Now that his weight gain has plateaued, we'll need to slowly increase the amount he's being fed, starting with increasing the rate of his daytime boluses. While we don't expect the same rate of weight gain he's had, he does still need to gain weight.

Doc P brought up radiation therapy today, something we thought was off the table when the Infantile Fibrosarcoma diagnosis was confirmed. With the tumor growing off his pelvic bone, Doc P is worried that some cancer cells might remain on the bone even after surgery. The other choice, removing the bone where the cancer cells might remain, is not an option. Doc P also confirmed his agreement with Doc A, that we will almost certainly start a new schedule of chemotherapy after his MRI.

While this tumor is usually just treated by surgical resection, the surgery-only option is only available if it can be cleanly removed. In the case of our fellow IF friends, Gavin had so much tissue removed from his arm that Jodie had to send him into surgery not knowing if he would be coming out with his arm or not, and he still has reconstructive surgery scheduled in the future. Liam had to have a lung and affected bronchi stem tissues removed so he could be entirely clear of the cancer cells.

Now that we know that radiation is back on the table, we don't feel so bad about additional chemotherapy. If the extra time for the tumor to shrink and Alan's pelvic bone to recover means that we can avoid radiation without removing anything except the tumor, we're fine with that!

Office Visit 6/24

06/24 13:25
ANC 10815

We went in today for counts and Vincristine. His white blood cell counts were high, thanks to all the Neupogen shots, but we're expecting them to dip in the next few days. No shot today since he received the Vincristine, but we went home with a shot for tomorrow. We'll see how things look on Friday.

Doc A scheduled our MRI two weeks from now, after next week's dose of Vincristine. Then we'll really see what the last three months of chemotherapy have done to the tumor!

Office visit 6/22

06/22 10:33
ANC 9843

After a fun and busy weekend, we were back at the doctors' for counts and to turn in all the sharps from the Neupogen shots over the weekend. Alan's counts are high, but they are expected to drop quite a bit later this weeks as last week's chemotherapy treatment really hits, so we got another two shots of Neupogen. We'll be back on Wednesday for Vincristine.

We talked to the docs about big brother Kevin's 4-year vaccinations. Our pediatrician was worried that the shots with live vaccines could make Kevin a risk to Alan so we held off on those ones until we could consult with the oncologist. Doc P wants us to hold off on the chicken pox, but we'll go ahead with the MMR. We'll see how Alan is when the time for school starts - we may need a medical waiver from Doc P so Kevin can go back to school without one of his shots.

This time we got to go into the Seashell Room! Alan checks out the blue octopus.

Alan loves Daddy's PSP. It sure makes the time goes by.

Office visit 6/18

06/18 10:15
ANC 2630

We returned to the doctors today to take Alan off his IV fluids. Alan was feeling rather frisky this morning, and pulled the needle out of his port while romping about. At least this time, it happened near the end of his treatment instead of in the middle of it. Since he had VAC yesterday, they sent us home with more shots of Neupogen to help support his white blood cell production. They gave us enough for the weekend since we don't have to go back until Monday, yay!

This afternoon we had the kiddy picnic table out since we had some little friends visiting from Houston. Alan came over to see what the big kids were up to and started cruising around the table. He must have made two or three circuits! Alan had done a little bit a cruising before along the couch, mostly hopping on his good leg while putting all his weight on his arms on the couch. This time it was real cruising, actually putting some weight on his right leg. After enjoying some bubbles on the patio while the big kids played in the back yard, he climbed the stairs again. What a busy day!

Office visit 6/17

06/17 09:24
ANC 2580

We're at the doctor's office for chemotherapy all day today - VAC. After getting blood at the Children's Cancer Clinic yesterday, we brought the play yard over to the office for today. Handy!

Daddy was wondering exactly what Doc A meant by "brutal" when referring to Alan's eventual surgery, so we asked today. Besides the fact that any surgery will be messing around amongst Alan's abdominal organs, there will also be the effect that removing the tumor will have on his bones. At one point, the tumor was growing against his spine and it is still supporting what's left of his hip bone. At his age, that bone is still mostly cartilage and has a good chance of growing back, which is what we're hoping is happening as the tumor shrinks. But if it is removed all at once, there won't anything left to provide support.

Doc A is leaning towards an MRI in a few weeks so we can get a more detailed image of what is happening with his hip. Though he's warned us that we're more likely to schedule more chemotherapy than a surgery, we won't know for sure until the MRI and a surgeon has a look at the scans. Pray for a good result for us please!

Clinic day

Today we went to the Children's Cancer Clinic for Alan's blood transfusion. Mommy and Daddy spent all evening last night trying to find the luggage cart so Mommy could bring along the play yard while pushing the stroller. The clinic doesn't have any cribs - heck, because it's an outpatient clinic, it doesn't even have any beds. Just lots of chairs, including the cutest, teeniest little recliners I've ever seen.

Dragging the play yard in today was the best thing we've ever done. At the doctor's office, we usually get one of the beds against the wall and drag the chairs next to it to provide a bit of a barrier, but it's still exhausting keeping Alan from going over one of the edges. We have to keep close, which means Alan usually doesn't nap. This time, Mommy was able to let Alan romp around the play yard to his heart's content without hovering over him. Pretty soon he was lying back on the pillow snoozing away (I'm sure the Benedryl they gave him before starting the transfusion helped).



He actually slept through one of the times they came in to take his vitals. The nurse mentioned how cute it was when the older toddlers come in and fall asleep in their itty bitty recliners during their treatments. As cute as that image is, I hope we will be long past needing any treatments when Alan is old enough to kick back in a Lazy Boy.

Climb every mountain

After dinner, Alan crawled out of the dining room to the window by the front door to peek outside. This is a favourite spot of his, so we let him stay there while we cleaned up. Daddy came back out and called out - Alan was climbing the stairs!

Before the diagnosis, Alan loved to get to the stairs and climb, but after we got home from the hospital, his right leg didn't have the strength to support his weight or lift him up. Well, that changed tonight!



Look at this happy face! Mommy went running for the camera while Daddy spotted him from behind. By the time she got back to the stairs he had already made it up to the landing.



By the time he got to the top of the stairs, he was good and tired but still determined. Once he got upstairs, he was crawling so fast he was practically galloping. It was like he was hyped on his own power. We were so happy to see him get back one of his favourite activities!

Office visit 6/15

06/15 12:55
ANC 3456

We had a later appointment than usual because Doc P was out of town, so Doc A had to handle all of us on his own. Alan's white blood cell count is good, but the red count is a little low and with a treatment of VAC on Wednesday, Doc A wants Alan to get a transfusion so he's better able to recover. So tomorrow, we will be going to the Children's Cancer Center to get his red count back up.

Since Wednesday is Alan's last scheduled treatment of VAC, we talked a bit about what's ahead. When Alan's scheduled chemotherapy is finished at the end of June, we will have another scan - either another CAT scan or MRI. Doc A doesn't think we'll be ready for surgery yet. The last CAT scan showed some shrinking, but more importantly that the tumor was dying. Doc A was more concerned that the tumor stopped threatening Alan's leg, which is now achieved.

We have been anxious to have this tumor out of him, but Doc A says the surgery will be brutal, and he wants to be sure to do it only when the pros outweigh the cons. He sounded like he would like to try another type of chemotherapy, but because Infantile Fibrosarcoma has been clinically proven to be treated well with VAC he needs to try that first. He has indicated before that we may try another type of chemotherapy.

Prom night interview, part 2

In addition to the news camera, there was also a newspaper reporter for the North Central News at Goddard's Preschool Prom last Friday night. The article came out yesterday and can be seen here.

Office visit 6/12

06/12 09:30
ANC 1389

A short trip today, even though we were prepared for the possibility of a long day. Doc P warned we might need a blood transfusion, but his counts were good so we got home in time to take big brother Kevin to the pool for the MOMS Club End Of Year party.

Because his port was accessed today, Alan had to stay on the sidelines. While we were there, a lot of the moms came to check on Alan, telling us how they were reading the blog and praying for us. We are so grateful for all their support! Kevin had fun in the pool, ate pizza, and had a banana popsicle. While Kevin had lunch, Alan rather noisily demanded some of the pizza. Like a friend of ours commented last night, the trick to getting Alan to eat may be to sit him in view (but out of reach) of his big brother eating. While bits of pizza were found in his seat, he certainly ate some of it, and the fact that he was voluntarily putting food in his mouth is great!

When it rains

... it pours!

Less than a week ago, we felt so isolated, at least in terms of finding other families that were taking or had taken this particular journey with cancer. Then Jodie found our blog last weekend and reached out to us with Gavin's story. And then we met Kristi and her daughter Sydney last night, another family that had dealt with cancer in a baby.

Today, another family found our blog. Baby Liam was born with Infantile Fibrosarcoma the same day we entered the hospital! Either the stars are aligning, or Google has found references to this blog and moved it up the results list.



Alan has been taking his feeds better. He was quite playful today, including getting into his big brother face over Kevin's birthday present. Both boys just LOVE the McDonald's cash register - all those buttons ya'know.

Alan adores his big brother and wants to be with him all the time. He used to drive Kevin into hiding in the laundry room, where he would sit outside and wail because his big brother had shut him out. Not content with crowding him over the toys, Alan pulled up to Kevin's little table at dinner and started grabbing food! Hurray! He had several bites of ham and bread, and even some Southwestern Ranch Baked Lays! That's the first solid food he's eaten in quite a while.

On the way up the stairs to bed time, Alan laughed and wiggled in Mommy's arms while going up the stairs, dodging around Mommy's head trying to get a good look at Kevin come up behind. While Daddy was cuddling Alan to sleep, Mommy kept hearing hearty chuckles coming from his room. Daddy had been rubbing Alan's head with his cheek and Alan was loving it!

We appreciate moments like this, because they remind us that Alan is not just a cancer patient, but a wonderful little boy who loves life.

Baskin Robbins

Tonight was the fundraiser at Baskin Robbins sponsored by The Goddard School. It was pretty crowded and festive for a while. How could it be anything but fun with all that ice cream? We were so touched to have people from MOMS Club and their friends and neighbours come out to support us, as well as the parents and staff from Goddard. Every day we are so thankful. We have been given a great trial, but we have also been given great blessings.

One of those blessings was a neighbour of one of our MOMS Club friends. Kristi's daughter Sydney was diagnosed with cancer when she was only 15 months old. She had a different type of tumor and had her operation first, then chemotherapy, but they still had so many experiences we could relate to. It was so wonderful to talk to Kristi about getting an infant or young toddler though cancer. It turns out they were also patients of Doc P! Sydney is now a healthy active big girl coming up to 5 years in remission! We hope she and Alan can take part in future Relays for Life together as the youngest survivors!

Office visit 6/10

06/10 09:29
ANC 4166

One more dose of Vincristine today before the last scheduled treatment of VAC next week. Alan's blood counts are good, so we're on for the Baskin Robbins fundraiser this evening. Doc A danced and bounced for Alan again, which he enjoyed with lots of grinning and a few laughs. With only 2 days back on a proper feeding schedule, his weight has bounced back over 20 pounds to almost 21 pounds!

He's certainly frisky today. Mommy has had to chase after him with the feeding pump while he crawls around and pulls up to the coffee table for cool things with buttons on them. We'll see if he bothers to nap any more today!

Fellow traveller

Today was a red letter day. Another mother contacted me through the blog - Jodie also has a child with Infantile Fibrosarcoma. Gavin was diagnosed when he was only three weeks old and is about to celebrate three years in remission. Yay! She still occasionally googles the term, and found a link that led to this blog.

We spent over an hour on the phone tonight, comparing stories and Jodie giving me a lot of perspective and hope. Childhood cancers are rare (1 to 2 children develop the disease each year for every 10,000 children in the United States). Soft tissue sarcomas are rare among the childhood cancers - to put it in perspective, there are only 350 cases of Rhabdomyosarcoma (the most common soft tissue cancer in children) diagnosed in the United States each year. Infantile Fibrosarcoma is extremely rare, even among the soft tissue cancers. One of the few articles we've been able to find on it was a study of 11 infants who had been diagnosed with it between 1982 and 1998. That's less than one case per year, and that certainly reflects the experience that Jodie and we have shared. When she was dealing with Gavin's treatment, she felt alone. Other childhood cancer patients had support groups and organizations, and most importantly, a community of people who went or were going through the same experience. She eventually found one other mother who's son had fought Infantile Fibrosarcoma years before. Now years later, she found us. I don't know if there is any way to find out, but I strongly suspect that Alan is the only patient fighting this particular form of cancer at this time.

I am extremely grateful to Jodie for reaching out to me. She is following Mr. Cheeks Goes to the Hospital now, so please, everyone send out thanks and good wishes to Jodie, Gavin and his big brother Nicholas.

Office visit 6/8

06/08 10:57
ANC 3767

Good counts again, thank goodness for small mercies! Alan's uric acid level is still a little high so we're starting a new medication to take care of that. Hopefully, it might also make him feel better enough to eat a bit. Doc A had Alan laughing and curious with his bouncing and dancing. That was a nice light note before heading back to Pediatric Radiology in the sub-basement.

Doc P ordered an NJ tube this time - Nasal/Jejunum. We are bypassing the stomach and duodenum and going straight into the middle portion of the small intestine. Hopefully, with the tube so far in, Alan will not be able to vomit up the tube and we can forestall the G-tube for longer. We'll also change the feeding strategy. Alan hasn't had any problems with the boluses during the day, or with the rate for the continuous feeds at the beginnings of the night. We think part of the problem was late in the continuous feed when the cumulative amount may have become just too much for him. So, instead of 12 hours overnight, we'll go for 10. We'll aim for 1000 calories a day between the overnight feeds, the daytime boluses, and (cross your fingers) actual eating.

Prom night interview

There were newspapers and a local TV station at the Preschool Prom on Friday night. One of the papers and the local Fox station interviewed us since we were the recipients of the fund-raising efforts of The Goddard School.

Feeding tube fiasco, the sequel

Daddy took Alan to the PED-ONC ward for a new feeding tube yesterday, then the two of them had a nice nap after a hard morning.



In the wee hours of this morning, almost to the same minute as the night before and under pretty much identical circumstances, Alan vomited up his feeding tube again. This is the third time. We've noticed a very high correlation between Alan gagging or vomiting and his poops. Doc P agreed that straining for a BM will often cause the NG tube to stimulate the gag reflex.

We're getting a break today. Doc P says there's no point in repeating this exercise in futility. We'll try the putting the tube in again tomorrow at his office visit, but after they confirm he's fine after the next treatment of Vincristine on Wednesday, we will have to talk seriously about a G-tube going directly to his small intestine.

Feeding tube fiasco

In the wee hours of the morning, Alan vomited up his feeding tube again. Like the last one, he had this one in for little more than 12 hours. Doc P is sending us back to the PED-ONC ward to have a new one placed in later this morning. At least we won't have to go to the Pediatric Radiology Waiting Room in the sub-basement again.

I have a bad feeling about this. When this happened last time, Alan's weight was good - chunky even. The docs decided to give Alan a break and a chance to eat on his own. This time his weight is too low, and if it doesn't go up enough, we won't be able to go through with the next chemotherapy treatment. The docs may want to start considering the G tube. I guess we'll see how the weekend goes. Hopefully it was just a fluke. Otherwise, the office visit on Monday may not be as routine as we thought it would be.

The prom

Since Jaz and Em's mommy has been helping to watch Kevin during Alan's treatments, Kevin has often accompanied them to their school. In the last couple of months, the people at Goddard have come to know Kevin and through him, the story about Alan and his fight with cancer.

We were really touched when Julie, the school's owner, offered to make us the recipient of the fund-raising at their preschool prom. We were unsure at first, feeling like we shouldn't take advantage. After all, we are blessed with good insurance, good friends, and some amazing accommodation from both of Harold's jobs to make it possible for him to stay in town. Julie shared her experiences of a relative fighting cancer, pointing out that there are a lot of other expenses in these circumstances. She had a point - how much more we spend filling up the cars with all the back and forth getting Alan to his office visits is just one example. At the same time, the advantage of Harold being able to stay in town is somewhat offset by less income. While we aren't exactly hurting yet, it certainly pinches.

Besides that, Julie said they wanted to support a local family rather than a large, impersonal charity. These people are our neighbours, members of the same community, and they wanted to keep it local. Talking to fellow moms about Alan, I know his story hits close to home - There but for the grace of God go I. In some ways, I think the other parents feel it more than we do because their imaginations run free while we are forced to handle the treatments and changes to our lives head on. We don't have time to worry about what might be, because we're too busy dealing with what's next.

Well, the boys attended the prom tonight, getting their "dates" Jaz and Em lovely silk wrist corsages. It was an adorable event, with dancing, karaoke, a balloon artist and limo rides around the parking lot. We got another surprise - the local Baskin Robbins which was supplying the ice cream sundaes to the prom has offered a fund-raising night for us, sponsored by The Goddard School.

Between everyone who comments and sends encouragement on the blog or Facebook, the Sunday School class of our good friends the Wolfers, the MOMS Club, Kevin's classmates and the PTA, our playgroup as well as the extended network of their friends and families, and now Jaz and Em's school and Baskin Robbins, we have been so blessed and so overcome by gratitude. The simple fact of all this support by everyone from the closest of friends to the newest of acquaintances and even passing strangers has really given us strength. So thank you for reading, commenting, and sending us your best wishes. It really does make a difference.

Office visit 6/5

06/05 09:26
ANC 6599

Good news and bad news today. The good news is that Alan's counts are fine, which means no more shots of Neupogen. Yay! The bad news is that he is continuing to lose weight, dipping below the 20 pound mark. So we're back in the Radiology department waiting to have the NG tube put back in. While it will make administering his medications easier and get his weight back up so he can handle the chemotherapy, he will not be happy. It's been so nice to be free, but he has had a week and a half of freedom to start eating, or at least drinking, the 1500 calories a day the docs want for him. We haven't even come close. Adequate nutrition is a vital part of his chemotherapy regimen, so unfortunately, we'll be back to the feeding tube for the foreseeable future.

Bubbles in the backyard

It was an uncharacteristically cool morning, so Mommy took Alan into the backyard so she could plant some basil and feed the tomato plants. To keep him happy, Mommy got the bubble blower out, and he had fun being surrounded by bubbles.

It was frustrating for Mommy, because we were so close Alan being able to join his big brother playing in the backyard - he was walking well and had finally outgrown the desire to cram mulch into his mouth. Now that he's fighting the tumor, it will be a while before he can start running around the yard. He will probably have to spend the summer in splendid isolation in the outdoor high chair or perhaps in the swing. We were looking forward to having two little boys exploring the yard together.

Office visit 6/3

06/03 09:45
ANC 7611

Another good blood count, though we'll continue the Neupogen for another two days and check one more time on Friday before discontinuing the shots. We're in the Mushroom Room again for Vincristine and IV fluids. Alan's last blood test showed a high uric acid level (over 8 - anything over 6 is considered high), so we're here for a few hours. Alan was in a good mood after they were done poking and prodding him. He even played the bounce game with Doc A, which was encouraging. Doc A said this was the most interactive and playful he'd seen Alan in the last six weeks since we started chemotherapy.

Alan's weigh-in showed a gain of a few grams, which means we can hold off on feeding tube for a while longer. The dehydration is a problem though. Most of it is due to his weight loss, but we're caught in a bit of a bind. On one hand, Alan loves drinking water. In fact, he prefers it to eating or drinking anything else. On the other hand, we need him to drink Pediasure for calories since he won't eat anything. The only way to get him to drink enough Pediasure is to limit the water so his tummy is not too full and he's thirsty enough to drink the Pediasure. He's been drinking more - hopefully it will be enough, both for his weight and his hydration.

Office visit 6/1

06/01 09:45
ANC 10687

Alan's blood counts are looking fine, but the docs want to continue the Neupogen since the effects of VAC won't really hit him until the end of the week. As expected, Alan has also lost weight - about a pound since our last visit, putting him just above the 20 lb mark.

He starting to drink his fortified Pediasure in greater amounts. So the docs are waiting until we go in on Wednesday for Vincristine to see how his weight is. We may try adding Duocal, a tasteless powdered calorie source, to his Pedialyte or to plain milk. Ever since the chemotherapy started, he has favoured savory over sweet, which has made increasing his calorie count rather difficult. Like us, the docs are happy with how active and playful Alan is without the feeding tube. We're doing everything we can to keep it out of him.