Office visit 1/23

01/23 11:37
ANC 2174

After a good day at school, we headed into the office for counts. As we were picking Alan up from PPCD, we had a discussion with his teacher Ms Anna and the school PT. Alan has been getting more and more tired and irritable at the end of long walks (usually between the classroom and the library or playground). They wanted to put out the possibility of having his wheelchair as an option so he wouldn't become too tired by those long walks. He would still be walking around on his own in the classroom and at the destinations, but while he's dealing with the lessened function because of the pressure on his nerve and recovery from the chemotherapy, they'd like him to have a little more help. While leaving his wheelchair at the school isn't an option, we'll bring a lightweight stroller they can use for those trips.

At the office, Alan's blood return came easily, though he had to lie down in order to get a sample. The counts are all good, so we'll be back on Wednesday for another check up. We talked about Alan's medications and pain management. Doc P told us to give Alan two Fentanyl patches (six days) and then we'll see how his pain is. So far they have done the trick though we are allowed to give him the occasional dose of Hydrocodone for any breakthrough pain.

We told him about the adjustments being made at school and he agreed. For now, he would also like Alan to take a break from PT, at least until the two cycles of chemo have had a chance at shrinking the tumor and giving him relief. We will reassess after his MRI at the end of February.

After lunch out in the fresh air and some ice cream, we went home where Alan slept through the afternoon. He's been working so hard!


Back at school and getting to be the circle time leader


Alan saves up all his energy to be independent at school

Pain management: The Sequel, chemo recovery, and St. Baldrick's in San Antonio

Since the last chemo treatment, Alan has been sleeping and resting a lot, but very restlessly. He was in a good mood all day but wasn't up to staying at school on Friday. He napped his way through the day, but was still tired enough to fall asleep at bedtime. We spoke to Marcia, Doc P's chemo nurse about last night's difficulties. We were worried about the medications he threw up while vomiting last night, especially the steroids. Since Marcia had given him some of the steroid by IV on Thursday, she wasn't concerned about the dose he lost that night as long he got his dose for Friday and Saturday.

Just before midnight on Friday he asked "Owie please!", his way of saying he was in pain. We gave him a dose of Hydrocodone but an hour later he was still in pain and asking for help. It was time to use the Fentanyl patches that Doc P had given us as a backup. It would take some time to work through his system - he was restless and up playing with the iPod Touch. He finally settled into a calm sleep between 5 and 6 am and proceeded to sleep through until 3 PM in the afternoon. We were a little worried at first with all the sleeping. He had a little wheezy snore and slept with a tight grip on the iPod Touch. Consulting a physician friend about the effects of Fentanyl made us feel better. The Fentanyl will make him sleepier than the Hydrocodone did, which in combination with the chemo and sleepless night resulted in yesterday's sleep marathon. The snoring just meant he had fallen into a very deep sleep - a good sign.

Another good sign? Alan slept through the night! He woke up around 7 am and asked for milk, then came into mommy and daddy's bed to sleep for another hour and a half. It looks like we have his pain under control again. We will consult with Doc P tomorrow about these developments.

Finally, a St. Baldrick's Foundation event has been organized here in San Antonio for March 11 to raise money for childhood cancer research. Mr. Cheeks regulars may remember that last year we went up to Austin, where several participants at a St. Baldrick's event there had dedicated their shave to Alan. Coda and Wyland have gone up to Austin to participate for several years, but their parents Paul and Lana had been working on bringing an event here to San Antonio. Well they have succeeded and scored a great location on the Riverwalk to boot! If you're on Facebook, please "Like" the St. Baldrick's-San Antonio page to keep up to date. Even if you are not on Facebook, you can go to the page to see information without signing up.

School business

I went by the school today to drop off a note for the school nurse Mrs. Pillow and Alan's PPCD teacher Ms. Anna happened to be in the clinic. It was good timing, since it gave the three of us a chance to talk about the options for Alan at school as his treatment continues. There are three paths:

1. Status Quo - We continue as we've been going, three full (half) days at school and two days a week where we pull him out early for preschool. We would also keep him out of school as needed for chemo, office visits and if necessary for neutropenia. Obviously, this would be the ideal situation.
   
   
2. Revised ARD - If Alan is consistently unable to attend on a regular basis, we revise his ARD paperwork for fewer days attended a week. This keeps him on the bus and in the classroom, but with less time dealing with the school office over his absent days.
   
   
3. Homebound Status - If Alan is severely laid up and unable to attend school on any regular basis, he can be put on homebound status. Under this status, a special teacher (consulting with his speech therapist at school) will come to the home for lessons about an hour to hour and a half a week. He can go to school for parties and social time as he is able, but it would be under our supervision. He would not ride the bus and we would not be able to leave him in the classroom.
   

Ms. Anna has taught children as a homebound teacher and she said they just wanted to be at school, not have time with yet another adult. Nurse Pillow spoke of a student who had gone through Ewings Sarcoma treatment attending the school the entire time. Alan has already missed so much time with his peers I hope that he handles this new regimen well enough to minimize any disruptions to attending school. Doc P and Doc H2 fully support this as well, so I pray that Thursday's treatment won't be too hard on him.

We had been worried that the tumor and pain was holding him back. At home he seems much less active, crawling more than walking and sitting or lying down rather than moving around. Apparently, according to Ms. Anna and Ms. Kim (the special ed teacher who helps him at preschool) he has been very active at school! He's all over the playground and using the walker to get around like a champ! Ms. Anna said he has even been using the walker cut in line. *headdesk* Obviously he is saving all his energy for school.

Last Christmas I had noticed Houston school district rooms both at the Children's Cancer Hospital at MD Anderson and the Ronald McDonald House, so I asked Nurse Pillow if she knew how that worked. Since Alan would be considered resident in the Houston school district if he was staying there for Proton therapy, it would mean dis-enrolling him from his current school and re-enrolling him in the Houston district. His current ARD and IEPs would transfer with him so he would be pre-qualified for services there. Of course it would be ideal if we do his treatment during the summer break. We'll see - there are still plenty of questions about his treatment plan to answer before we get that far.


Ms. Kim took this picture of Alan working hard to get to the playground at preschool with the help of a little friend.

Pain Management

Alan slept through the night! It's been almost a week since he has, which along with other cranky behaviour has had us worried. We had gone almost two weeks without needing to give him any Hydrocodone once the Gabapenten had built up in his system. Things have been worse this week though. We started giving him the Hydrocodone at night to get to sleep, and then eventually during the day to keep him going. We were worried on several fronts. First of course was that Alan was not having a functional life if he was in pain all the time. We wanted him to be comfortable. Then of course we were concerned with what the pain meant. We hadn't started the new chemo regimen until last Thursday so the tumor was continuing to grow and press on the nerve. The Hydrocodone did the trick for a while, but we were concerned about the long term effects of using it regularly. Marcia had warned us on Thursday that the Hydrocodone could cause some severe constipation.

To make matters worse, the Hydrocodone seemed to be losing it's effectiveness against Alan's pain. We were giving it to him every six hours and it was barely making it from dose to dose. Since Alan is so prone to constipation anyway, we were concerned about the effect the constant doses he was getting. Were we trading some limited and increasingly lessening pain relief for another kind of pain?

Alan managed to make it to a birthday party on Saturday afternoon but was quickly tired out. A friend who deals with chronic back pain confirmed to us how exhausting constant pain can be and suggested a heating pad which would relax the muscles. Doc P had given Alan some Ativan on Thursday for the same reason. No surprise, Alan wouldn't stand for the heating pad. He was so tired he fell asleep quite early on Saturday, but was up several times during the night. Doc P had increased both the dose and frequency we were giving him Gabapenten, but like the initial dose, it would take a while for the new level to build up in his system. Ideally of course, the chemotherapy would shrink the tumor so it would no longer press on the nerve.

On Sunday, Alan was much like he was that day back in December - wanting to spend the morning in Mommy's bed, twisting himself around in pain. At this rate, we were worried that we would run out of options for managing the pain if the wasn't responsive to the new chemo. We phoned the office for the doctor on call and got Doc A. He was surprised to hear about Alan - he had not heard the result of Alan's visit to the ER in December and did not know that the tumor was back. We talked about some options and decided to start with Milk of Magnesia. We had been using Miralax to help Alan along, but Doc A prefers Milk of Magnesia. We didn't know it could be used in smaller doses in much the way Miralax is.

We went out at noon for some fresh air, though Alan preferred to play with the iPad while sitting in his wheelchair while Kevin ran around the playground. He fell asleep easily and even though he tooted through the night (like a little machine gun!) he slept through it all and even slept in a little! So far so good, whether it's the Milk of Magnesia, chemo, Gabapenten or a combination of them.

Carpe Diem

With the looming prospect of a new chemo treatment with as yet unknown effects, radiation therapy most certainly in his future and the possibility of another radical surgery, we've been trying to take Alan out to enjoy life as much as possible. We've been through this feeling before, like we have to live life to the fullest and make lots of memories just in case the situation gets really rough.

That has included a trip to SeaWorld with Grandma before the season ended (where Alan discovered the joys of a big bucket of popcorn and rode the penguin habitat moving walkway over and over again), a late outing on a school night to see an amazing tree lit with thousands of lights, and many visits to Chuck E. Cheese.

Alan has come to love Chuck E. Cheese so we've been going there a lot lately. He loves the games and rides and feeding the ticket muncher. We met his PT there today so we wouldn't have to rush home. All the fun and games kept him distracted while she worked on bearing weight on his bad leg and motivating him to squat and jump.

Alan had so much fun feeding the ticket muncher that when he was done, he walked over to the Ticket Blaster and knocked on the door. "Open please!!!" He wanted to get to all the tickets inside. As much as we want to indulge him in all things, it was time to go home.


At SeaWorld with Grandma


A yummy Shamu ice cream


Check out this beautiful tree!


"Oooh, ahhh!"


One of Alan's favourite games - look at all those tickets!


Another fun game, flying a jet!


"This is great!"


Working hard for the PT while feeding the ticket muncher


Punching ducks with a little friend

Dipping a toe into normal life...

Alan's playgroup met for the first time today. We won't be able to go regularly until after his surgery, but it was nice to meet some of the kids he'll be playing with. We went to Morgan's Wonderland, where everyone had a great time! Alan's been many times before, but this was the first time with little playmates his own age.


The boys on the Pirate Ship playground

Working hard

The weather has been beautiful and cool, so we've been taking Alan to a park or playground every day this week - 5 days, 5 different playgrounds. He's been having so much fun running, jumping, climbing and most significantly, playing with other children. This is the work that kids his age are supposed to be doing, and work that he has had precious little opportunity to do in the last 18 months.

When his PT came to see him on Thursday, he was a little resistant to some of the exercises he usually does without protest. When we told her about all the time Alan had been spending playing, she was very happy. While she was a little concerned at first that the tumor might be impacting his abilities, she was encouraged to hear how hard he had been working on the playground. It was more likely his muscles were tired and sore from the unfamiliar vigorous play, and compared to that, his PT exercises were rather boring. Besides, functional activity like romping all over a playground was much better for him than any sit-ups or stair work.

It has been so wonderful to see him so happy. The last two summers he's been somewhat isolated, and I almost cried to see him so excited to run around with other children.


Climbing up and down while Mommy and Miss Becky have breakfast

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[video]
It's fun to run around!
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Look at that big grin!


Alan just had to abandon the playground and climb the rock when these big boys arrived.


It's a long way down!


Not content merely to climb the rock with the big boys, Alan insisted on following them on their walk too!


Alan was a little hesitant about crossing this bridge until he saw a big boy do it. Monkey see, monkey do!

First session with the PT

We met with Alan's PT last week for an assessment, but today was our first full session. Miss Erika started off with some stretches and then they hit the stairs. She wants to build the muscles on Alan's right leg and stretch his hip flexors, so she showed us how to help Alan work them. She wanted to see how Alan walked in shoes, so we ended up outside. Kevin and Alan were excited to get outside, even though I had to get them jackets since it was a little chilly.

Not only did Alan climb up the steps to the slide (and the slide itself), he enjoyed strolling up and down the dry creek bed, walking across the grass, and following the cobblestone paths - all of which were good exercises for working on his balance. Miss Erika was very pleased with how Alan was handling the uneven surfaces and inclines, and said that our yard was perfect for his therapy and development.

After she left, the boys continued to play in the backyard since the sun was started to peek out from the clouds. They were having fun - perhaps a bit too much fun. When I checked on them later, they were covered in dirt from head to toe! Messing around with the new mulch was just too much fun.

After an early (and LONG) bath, the boys had lunch - and good news, Alan ate some chicken noodle soup for the fourth day in a row! Real food - perhaps we've turned a corner? We can pray! Alan worked and played hard today and had a nice long nap!

We're going crazy

Well we're going crazy waiting here. The radiologist sent the report on the PET-CT to Doc W and Doc P on Wednesday afternoon. We haven't heard from either of them so we assume there's nothing too dramatic. We looked at the scans from the disc the radiology tech gave us, and it looked pretty good to us. Of course, there's a reason you have a Radiology MD read the scans.

Doc L hasn't gotten back to Doc P yet, and with the Thanksgiving holiday coming next week, who knows if we'll move ahead with anything until the beginning of December. Doc P hasn't even had us make an appointment at the office for a standard visit. We know that should be good news - they aren't worried about his counts and don't see anything critical to act on.

But it's driving us BONKERS! We feel better when we're doing something, and this waiting has us anxious. Unfortunately, short of going to the office and standing on Doc P's desk, we'll just have to be patient. Hopefully we'll hear something next week. In the mean time, we've been trying to enjoy life while we can, and we are looking forward to Po Po (Mommy's mom) and Uncle Peter visiting next week. Thank you for all the encouragement, good wishes and prayers that everyone has been sharing in the comments, via e-mail, Facebook and phone. We appreciate the ongoing support! We are truly blessed.


Alan gets his own keyboard!

Alan's latest scan

We are back from the PET-CT and Alan is napping. What a relief! In order for the scan to work, we had to cut off his dairy and carbs at noon yesterday - tough since virtually 99% of his diet is dairy and carbs. We were not looking forward this - all Alan would be allowed to eat was green vegetables, meat and drink water. He had no interest in the meat, but at least he was gobbling down broccoli. We deployed one of his birthday presents - an inflatable water play center - so he could splash in the water as a treat.



This morning he was so tired with no energy. He usually runs around in the morning like a little herd of elephants, but today he just wanted to lie down. He was restricted to water only at bedtime, and even that was cut off by 8 am this morning. While we were in the waiting room, he was trying to get to the bag in the stroller, obviously looking for something to eat or drink. He was only partially satisfied with his toys.

Unfortunately, only the doctor's office can access his port, so they had to get an IV line the old fashioned way. That did NOT make him happy. It took a couple of tries before we got a good line in. Then it was back into Daddy's lap while the radiology tech injected the sugar solution with radioactive isotopes. We had to wait an hour for the solution to work through Alan's system, and the nurse taking care of the sedation told us to be sure that Alan did not fall asleep. If he was tired and sleep-deprived she would only need a minimal amount of sedation to keep him still through the scan. So on top of being hungry and thirsty, Alan was also tired and mad because we wouldn't let him fall back asleep.

It all went well though. The nurse only needed the minimum amount for sedation and he stayed still throughout the scan. After some time sleeping in recovery, Alan was woken up and drank almost a whole cup of chocolate milk in one continuous gulp. At last! We were soon heading home with a copy of the scans on disc. Alan drank half-way through a second cup of chocolate milk, had a few animal crackers then fell asleep again on the way home. It's been a rough couple of days for Alan, but scans went smoothly.

The radiologist should be sending the report to Doc P and Doc W sometime today. In the meantime, our little man is having a well-deserved nap. Hopefully Doc P has been able to talk to Doc L today and will have news on that front too. Now we just have to wait and pray.

Waiting

We've just been waiting all week, trying to live something like a normal life. We sent the copy of Alan's scans off to Doc L at MD Anderson on Wednesday, and confirmed Alan's PET-CT scan for next Wednesday. Obviously, the surgery with Doc R is postponed until we see what Doc L has to say and we see the results of the new scan. We're trying to see if Doc W can conference in if not attend our meeting with Doc P on Monday afternoon, so we can sort out their conflicting views. I know it's a virtual impossibility for them to agree but we hope it will help us make our decision.

Alan went off with Daddy on Thursday morning for some fresh air and exploration. He's been carrying around, belly-flopping and rubbing his head on Ping, the new panda toy/pillow/blanket he got for his birthday. We're off to a little friend's birthday party this morning. We'll try to enjoy this weekend, since there will be tough decisions ahead next week.

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.

Eating

On Thursday night, Alan's feeding tube became clogged. Last time this happened, the tube had become harder and harder to flush over a period of several days, so we were not surprised. This time, it came on suddenly, in the middle of an overnight feed. After several attempts to flush the line, we left him to sleep. We thought it might be an internal kink in the tube that would work itself out (Alan had been rolling and twisting around a lot!) and hoped it might unkink.

We called the docs in the morning when the tube still wouldn't flush and Doc P said "Pull it out!", so Alan is tube-free again. It was definitely a clog in the tube rather than a kink because we couldn't even flush it after it came out.

We had been hoping he would start eating more since he had been chemo-free for almost a month but no such luck. We are hoping the tube was the final obstacle - 24 hours tube-free so far and no too much eating yet. Yesterday right after the tube came out he was willing to drink some Pediasure (probably because he was very thirsty - the tube got clogged about 200 ml into his first 400 ml feed and he missed the second 400 ml feed entirely) and plenty of water, but wasn't too interested in any food yet. Last night at dinner he entertained the whole family by picking and choosing which Baby Cheeto (aka Gerber Graduates Crunchies in Zesty Tomato) he would lick, which one he would eat, and which one he would feed to his cousin's dog Bobby, all with the discriminating air of a sommelier at a Michelin 3-star restaurant.

Alan had a cranky night, and we could see was no immediate reason for him to be so upset. He refused his milk, but we figured after all these months, he might have forgotten what it felt like to be hungry. After all, he'd been eating only a tablespoon or so of food on a good day, some days taking nothing by mouth at all. It's not surprising that he may have forgotten what eating was and was for! We tried again this morning, offering him some dry cereal and he started shovelling down the Cheerios!

While waiting for the plane ride home, we offered Alan some broccoli - one of his few favourite dishes lately. He refused, but was happy to try the noodles. Yay! Since he still doesn't seem to like the taste of Pediasure, we've been trying plain milk. It doesn't have the calories of the Pediasure, but it has a lot more than water! Maybe he'll tolerate the plain taste of milk better.


Alan is tube-free for now!

Feisty!

Alan has been enjoying our family trip - surrounded by adoring grandmother, aunts, uncles and cousins, crawling and exploring new spaces, and free from office visits, blood tests and IVs!

Not content with crawling up and around on everything and head-butting anything in his way, Alan has started walking again! Just a few steps at a time, and with a limp, but definitely moving a few feet at a time.

Today he has been especially feisty, trying to get to Bobby (his cousin's dog), walking towards the piano, crawling up and down the stairs, rolling all over the sofa, and laughing like a loon with Mommy and Daddy.

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.

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.

He stands!

It's been a fun tube-free weekend. Alan has been pretty happy and playful, but he is still eating virtually nothing. He's drinking fortified Pediasure, guzzling the unflavoured Pedialyte and this evening had a few pieces of potsticker filling. Hopefully he won't have lost too much weight over the weekend.

The good news is, Alan stood on his own for the first time since leaving the hospital tonight! He was in the bath tub, and for some reason didn't want to sit in the water. He was still putting most of his weight on the left leg, using the right leg mostly for balance, but he stood for almost a minute! It's a good step forward.


Unfortunately, no picture of Alan standing, but here's one of him as Destructo Boy

Fresh air

To celebrate Mother's Day, the whole family went on an outing - some where not the hospital, the clinic or the house! We went to the mall where we had a cold beverage at Barnes and Noble, Kevin went up and down the escalator, and Mommy got new books. We then went to the playground where Kevin had a great time with the slides and Alan enjoyed the fresh air and sunshine.





Alan had to stay in the stroller or on Mommy's lap, but he still enjoyed getting out. He was pretty active and happy all afternoon. Back home, he was all over the family room, crawling all over Mommy and Daddy and then crashing for a quick nap on the play mat.

One month later

Our lives have changed so drastically in the last month. It was one month ago today that Alan entered the hospital and we got the diagnosis of cancer. It feels like we've been tackling his tumour for years.

In the middle of all the change though, some things stay the same. Even with a bare head, an NG tube and hooked up to a feeding pump, Alan still loves emptying his basket full of balls and banging his toys together. It's nice to know that some things transcend the cancer.