Office visit 9/29

09/29 09:20
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This was just a quick visit for Alan to get the Vincristrine treatment we missed yesterday. Daddy had the chance take Alan this time and chat with the docs. Doc A gave us the phone number for Doc W, a pediatric orthopedic surgeon who has been looking at Alan's scans.

Office visit 9/28

09/28 12:15
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Alan's white counts are up which means no more Neupogen, yay! However, his hemoglobin is down to 8.7 which is low. We'll have to be prepared to stay for a transfusion on our next visit. He's had several chemotherapy treatments since the last transfusion, so it's not entirely unexpected.

At the end of the visit, Alan got a flu shot. All his other immunizations of have been put off - the suppresion of his immune system by the chemotherapy renders them useless, and in case of some of the live vaccine shots, even his big brother Kevin has had to delay a few shots. Everyone else in the family is getting flu shots, particularly to protect Alan. It's nice that he can still get the flu vaccine with the coming winter season and all the sniffles that Kevin will be bringing home from school.

On the way home from the office, we stopped by the grocery store for a couple more boxes of Nilla Wafers. These cookies were Alan's food of choice this weekend, and we almost ran out. Unforuntately, when we got home we realized that we had not gotten his shot of Vincristine. We'll go back tomorrow morning to get that taken care of and be back on schedule next Monday.

Office visit 9/25

09/25 12:30
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We're back at the office today for blood counts and more Neupogen. Alan had fun with Doc A, playing with his beard. One of Doc A's nicknames for Alan is "Bouncing Tiger", because he loves to bounce. Alan has lost weight unfortunately - he dipped below 22 lb. He's still eating, but less, and he was barely eating enough as it was. He seemed to be handling Monday's chemo well - there were no obvious signs of nausea like gagging or vomiting. Because Alan can't tell us what he's feeling, Mommy consulted with our friend Shirley, who just finished chemotherapy herself. One of the drugs she was treated with was also part of Alan's treatment, so it was nice to be able to ask her to describe how it affected her so we could get a better idea what Alan was going through.

One of the big things she shared was that Alan might be feeling nausea that would kill his appetite but not manifest in showy signs like vomiting and gagging. We hadn't been giving him Zofran because he seemed fine and we're trying to avoid over-medicating him. Shirley has tried the same thing, skipping her anti-nausea meds because she felt fine, only to regret it later. now we're giving him Zofran first thing in the morning and then again mid-day. Hopefully, his appetite will perk up.

A meeting with the surgeon

We went to Doc R's office today so he could have a first hand look at Alan. He also wanted to talk to us about the deliberations of the tumor board last Friday. We were hoping that the tumor could be easily removed, but besides still being heavily involved with his hip bone, there are also a lot of nerves in the area they would rather not mess with if there was a better option.

The docs obviously have access to more research on Infantile Fibrosarcoma than we do. In our limited research, most cases we read about talked primarily about surgical resection as treatment, so in our minds, that was always the goal. There was also that very primal wish to get that )#$(%&@&* thing out of our baby boy.

However, in looking at other cases of Alan's type of cancer, the docs have noted that there were many cases that were treated only with chemotherapy, or with chemotherapy then surgery that had to leave some of the tumor behind (a positive margin). In these cases, the kids were healthy and cancer-free even years later.

The bottom line is that the plan for Alan's treatment is still fluid. We will complete the chemotherapy and scan again. There may be more chemo after, or exploratory surgery where only the easily accessed bulk of the mass is removed. It's hard not knowing what and when, but we're greatful that the tumor is responding to the treatment and that Alan is feeling good, eating and playing.

This morning we had oatmeal pancakes (I picked up a mix on a shopping trip to Williams-Sonoma with a fellow cancer mommy). Alan loved them so much that he was grabbing them out of Kevin's hand! Like the fig newtons, the pancakes made a big mess, but at 240 calories a pancake, who cares! This weekend Alan started climbing down the stairs as well as going up, not to mention getting up on the bed for snacks and scrambling up onto the sofa to peek over the edge. Messy monkey - he's driving us crazy, but it's the best kind of crazy!

Office visit 9/22

09/22 09:08
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We're back this morning to take out Alan's IV. We went home last night with IV fluids and IV Zofran. It was nice to be able to give him anti-nausea meds without having to wake him up. He has been continuing to eat even with the chemotherapy treatment. Of course, it's mostly dry, crunchy carbs. We'll keep on top of the anti-nausea meds so hopefully he'll keep eating.

We started Neupogen today - hopefully Alan's white counts won't go as low as they did last time. Mommy got some french fries on the way home, and Alan had a nice snack.

Office Visit 9/21 and chemotherapy

09/21 09:28
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We're in the office for VAC today. Since we were here all day, I brought the pack'n'play to keep him contained during the treatment. By the end of the day (during which Alan refused to nap), it was full of crumbs from the animal crackers, veggie chips and mostly from the fig newtons. Oh, those figgie bars are so messy, but Alan loves them and at 100 calories a piece, we really can't say no.

I also had a chance to discuss Alan's case with both docs and get more details on the results of last week's scans and the tumor board's discussion. The gross portion of the tumor in the abdomen has shrunken dramatically - both in terms of absolute size and proportion. They would have been able to remove that part of the tumor quite easily. However, there is still a part of the tumor that is inside the bone - infiltrating into his damaged bone all the way to the marrow. While that part is shrinking as well, it's still too involved with his bone to be easily removed by surgery without also removing large parts of the bone. Obviously not an option. Radiation at this point is not an option either since it would mean severe damage to his intestines. So we'll continue with chemotherapy to shrink the tumor, and as it shrinks away from the bone, the bone also has a chance to grow back.

Mister Cheeks eats a cracker

I realized that all the posts lately have been rather business-like, and we haven't been sharing the fun. Alan has been so playful without the tube, even though he's eating just barely enough to maintain his weight. Here he is with yogurt face and eating a tasty animal cracker.

Office visit 9/18

09/18 12:06
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Well, there was lots of good news today, but not the great news we were hoping for. First, Alan's white counts were back up after shots of Neupogen on Tuesday and Wednesday. That means we can take Alan out and about this weekend for some fresh air and company!

Second, the CAT scan and MRI results are in - the tumor is continuing to shrink (about 20% according to Doc A) and the bone continues to grow back.

But, as good as the results are, they aren't good enough to go on to surgery. There is still some involvement of the tumor with his abdomen and spine, and since Alan has responded so well to chemotherapy, especially the Irinotecan combination, they would prefer to shrink the tumor, giving the bone more time to heal and getting the tumor away from the spine and organs. I'll be able to get pictures of the scans and a copy of the report on Monday.

Doc R, the surgeon, wants a chance to examine Alan directly, so we'll see him next Wednesday. Doc A has also shown the scans to a pediatric oncology orthopedic doc, but has not had a chance to discuss Alan's case with him yet. We'll be back to the office on Monday for a course of VAC, followed by Vincristine the following two weeks. After that, another trip to the hospital for Irinotecan and Adriamycin over several days. We should be ready for another set of pre-surgical scans again at the end of October.

Office visit 9/15 and scans

09/15 10:45
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We went to the office this morning for counts and to be accessed before his scans this afternoon. Because Alan couldn't eat or drink anything before being sedated for the scans, we stayed at the office so he could get IV. Doc. A was puzzled because Alan's counts were so low, though it may just be an extended side effect of the chemo two weeks ago. We'll have an extra two days of Neupogen. We'll be back to the office on Friday to check his counts and we should also have the results of the scans by then. I heard Doc A tell Doc P he would present to the surgeons on Friday.

As expected, we had quite a wait in Pediatric Radiology. Having an appointment later in the day always means waiting for them to catch up. By the time they were ready to sedate Alan, we had a further delay because he wasn't falling asleep. It turned out that the needle in his port was slightly dislodged. The nurses were able to adjust it back into place and he finally dropped off. The scans took a little longer than anticipated because with about five minutes left to go in the MRI, Alan woke up and started moving. They had to get him back to sleep and then start the last section again.

Back at Pedi Prep & Hold, Alan snoozed away, waking every so often, then falling back to sleep. At one point, he woke up, sat up, and then fell asleep again sitting up. He absolutely refused to lie back, and I finally put a pillow in front of him to support his head. The nurses had never seen anything like it and Doc K, the anesthesiologist, was laughing as he left. He must have slept in that position for half an hour! We finally left after 5 pm, going home in the middle of rush hour. Alan slept all the way home and pretty much slept the rest of the evening.

Office visit 9/11

09/11 13:45
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Doc P was happy with all of Alan's check up today - all the blood counts were good, his weight was slowly creeping back up (22 lb 9 oz today!), and the rash was slowly but steadily improving. No more Neupogen, and we don't go back until Tuesday morning before the CAT scan and MRI. We'll get to the office nice and early to access his port and hang around with IV fluids until it's time to prep for the scan in the early afternoon.

The surgeon, Doc R has been notified about Alan's scans so he can check on the results next week. For now, we're happy to have an active boy, eating animal crackers and trying to tackle his big brother. We returned the feeding pump to the medical supply company this week with a little bit of apprehension - we were nervous, feeling like we might be jinxing his recovery. Well, he's been putting away food pretty steadily. So far, it's been mostly carbs (lots of crackers) but he's been eating yogurt pretty regularly for the last week (yay protein and calcium!). We'll just have to keep working on increasing the variety of food he eats.

Office visit 9/9

09/09 12:55
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Alan's counts have bounced back up, but the docs want to see us back on Friday, to be safe. Between his cold and the scratched-up rashes on his skin, he is still vulnerable to infection right now. Mommy expressed her concern for next Tuesday's scan - since our appointment isn't until the afternoon, Alan will have to be fasting for 13 hours (more actually since he will not have eaten after going to bed). Doc A suggested coming to the office before the scan to access his port and get IV nutrition. While he'll still be cranky about not being able to eat or drink, at least we don't have be as worried about him missing the nutrition.

Alan has been very cranky the last few days and why not? In addition to the cold, he has no less than 6 teeth coming in, 4 of them molars. That has meant drool all over his clothing (which added to his runny nose has meant a lot of laundry) and a lot of interrupted sleep because of the pain. He also had one more shot of Neupogen today, this one in the leg rather through IV. Doc A wanted to be sure he was well covered, and as we were told yesterday, IV Neupogen is not as effective as the intra-muscular shots. We got one more dose of IV antibiotics as well.

Office visit 9/8

09/08 09:20
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We came back to the doctors' office a day early today because Alan had a fever along with a runny nose over the weekend. Big brother Kevin had a runny nose last week, and though he's good about not touching Alan with germy hands, Alan loves grabbing his cups to drink out of. We try to keep them out of his reach, but with his Baby Force Powers, it's pretty tough to do without keeping them where Kevin can't reach either.

The flu test came back negative, so Alan got an IV push of antibiotics as well as a prescription for oral antibiotics. We'll need to wait for the results of the blood culture. We're being careful because his counts are very low, so he is also getting additional Neupogen (this time by IV, rather than a shot in the leg thank goodness!). IV Neupogen is not as effective as the intra-muscular shots, but we just need a boost, and since he's already accessed for blood tests, it's one less poke. We'll be back tomorrow to see how he's doing.

In the mean time, Doc P has scheduled pre-surgical scans for Alan early next week. He will be getting a CAT scan and and MRI. He wasn't able to talk to the surgeon, Doc R, last week, but will consult with him this week. It's exciting to see the docs move ahead with his treatment, and it's hard to to let our imaginations and hopes go wild, speculating on just how soon Alan might be tumor-free. Still, we have to realize that excising the tumor is not the end of his treatment, just another step, albeit a major one. There's still physical therapy ahead, and the possibility of radiation therapy. We're thankful for every bit of progress though!

Office visit 9/4

04/04 12:05
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Today, Doc P had a resident pediatrician working along with him. While we were taking Alan's vitals, the doc handed him a rabbit-in-magician's-hat puppet and told him to find his inner pediatrician - Alan had a great time playing peek-a-boo with the "rabbit" and grabbing for his ears.

We were a little worried that the doc would want the feeding tube back in since Alan still isn't eating enough. Doc P was expecting 2 lbs of weight loss though, so we're still within the limits. If he can pick up his consumption over the long weekend, we may be able to send the pump back to the medical supply company for good. Things are looking up though - Alan ate a cup of Yo Baby this morning and several pieces of banana - he was even signing for more in between spoons and bites. This is the first time he's used the "more" sign to ask for anything! Tonight he crunched on Baby Mum Mums, again signing "more" for another piece of cracker. Hopefully he is relearning the connection between that hungry feeling and eating.

The doc was happy enough with the blood counts to only prescribe us Neupogen shots until Sunday night. But he did prescribe us an ointment for the rash on Alan's skin. He's wants to be sure that Alan won't get an infection from the scratches and rash on his skin that will land us back in the hospital. Doc P agrees with Doc A that the tumor is small enough to talk surgery. In fact, he called Doc R to discuss the matter today! I'm not sure what there is to talk about before we get the next scan - I'm still not sure how the tumor board works. Still, it's nice to know that both docs think it's time to get that thing out of our baby. For now, thanks to the long weekend we're free until Wednesday!

Office visit 9/2

09/02 12:45
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Alan's weight is down (10.4 kg, down from 10.5 on Monday at the hospital) but he's finally drinking Pediasure again - a source of fat, protein, calcium, and most importantly calories! Mommy had noticed after coming home from the hospital on Monday that Alan let her squirt the Tylenol into his mouth without any fuss, so she experimented and gave him some Pediasure by dropper. After a bit of squirming, he was opening his mouth for it and even sucking on the dropper. Why didn't we think of this before? We got more than half a can into him on Monday, and on Tuesday, almost a can and a half. He speeded up his consumption when we switched to strawberry flavored Pediasure - Mommy noticed that he seemed to like the cherry flavoured Tylenol and was very curious about the red sauce in her bowl of pasta. This morning, he started drinking it from a straw cup.

In terms of eating solid food, it's still mainly dry baby crunchies and snacks. Consumption of "real food" like chicken, ham, fries, and broccoli is still sporadic - we never know when he'll want it. But the longer we can keep his calorie consumption up from any source, the longer we can keep the tube out and the more chance we can get him eating "normally" again. This afternoon, he reached for the Gerber Graduates Yoghurt Melts - toddler food, but a new taste and consistency. He certainly does seem to be a fan of the berry flavours.

Doc A was pretty happy with how Alan looked today - good counts, the rashes on his skin are dry and starting to clear, and he can feel a hip bone growing on his right side. He was hoping Alan would walk for him but instead he threw a bit of a tantrum because we took away the calculator he was playing with. The doc is pretty amused with Alan's obsession with button pushing - he calls him "Gadget Boy". That's ok, Alan is happy as long as Doc A still bounces with him. We'll be back for counts and more Neupogen on Friday since Alan will get neutropenic this weekend and the office will be closed on Monday for the long weekend.