Office visit 2/29 Day 3

02/29 12:17
ANC 7700

Halfway through!

Another uneventful day today. Alan has been handling this treatment pretty well. Still a little delayed today due to some of Doc P's staff being out sick. It caused us to have to come home during rush hour, which Alan didn't enjoy very much.

But today he watched more Nickelodeon and nibbled on various items, including Crabby Pattie gummies. Several times it looked like he was going to fall asleep, but he powered through... stubborn boy!

On the downhill tomorrow!

Crush Cancer!

With the tumor coming back, we have worked on events and organizations that raise money for research and awareness of pediatric cancer and sarcomas with a vengeance. We will be walking this weekend at a local event, the Wilenchik Walk for Life, to raise money for the the Cancer Therapy & Research Center at the UT Health Science Center. Several friends will be joining us to walk for team "Alan's Angels" and we so appreciate your support! It's not too late to join us if you're in town.

Next week, Harold will be shaving his head for pediatric cancer research at the first St. Baldrick's event in San Antonio. We will be at the Hotel Valencia on the Riverwalk on Sunday March 11. After attending a St. Baldrick's event in Austin last spring, we are glad to have one here now.

Then, on April 5, the boys' school will be PJammin' for the American Childhood Cancer Organization. Alan's PPCD teacher Ms. Anna is leading the way for the fundraiser, where the staff and children at the school will donate $1 to be able to wear their PJs to school that day. Our school community has always been so supportive to us from the very beginning. We were surprised by a gift from the Second Grade class. Every year they put on an economics fair where the students make items for sale and manage the "store". They chose to give part of their earnings to help us out. Alan made a tour of the second grade classes one morning so the students could meet him, then the second grade teachers presented Judy with the cheque that afternoon. What a blessing and a surprise!

And of course, we will participating in the 2012 Relay for Life on May 4, Alan's treatment permitting. Judy will be walking with her team Friends for Life, Alan will do a Survivor's Lap, and Harold will be repeating the Rockets for Relay fundraiser that was so popular last year.


"Kids Caring For Kids" - Judy with Ms Anna, the Grade 2 team, and school administrators

Office visit 2/28 Day 2

02/28 10:41
ANC 5358

Today was the same as yesterday in terms of treatment chemicals and durations per chemical. However, Doc P staff had a few sick call ins, so they were understaffed... Doc P himself had to administer our treatment today.

The blood return was fine today and Alan was content for most of the visit to watch TV, play with his spare tubing, and nibble on several treats like a donut, Cheez-Its, and jelly beans.

He got cranky near the end of the visit, but we were able to 'Go, go, go!' before he got really upset.

Mid week treatment tommorrow.

Office visit 2/27 New Chemo Cocktail Round 1 Day 1

02/27 12:20
ANC 6712

When we arrived at the office, Doc P had an e-mail from Doc H2 telling us to go ahead with Doc P's new plan and wishing us luck. So we settled in for a several hour infusion, and plans to come back every day this week. Alan was content to explore the contents of the snack bag and watch Nickelodeon.

The blood return came when Alan raised his arms up, so we spent a lot of effort to get him to shout "Hurray!", then it was the premeds of Zofran, Toradol and Benedryl. The Vinorelbine took 15 minutes, followed by an hour of Cytoxan and an hour of Topotecan with 15 minutes of saline flush in between. The entire process took almost four hours.

With some yummy snacks and ice cream, Alan was quite content through the process. Hopefully he'll feel the same way at the end of the week.


Alan is happy to have his vitals taken as long as he can watch the numbers!

Office visit 2/23

02/23 15:15
ANC 4508

With Wednesday's bad news we knew Doc P would not want to jump into a new chemo regimen without sitting down to talk with us, so we rescheduled the morning appointment that would have administered a third cycle of the old plan to an afternoon appointment so he would have more time for a discussion.

At least this meant Alan was able to go to PPCD and the rest of the day at preschool. The teachers and little friends at preschool were especially glad to see him as he had not been able to attend most of the time since the tumor came back. They practically came running when we brought him to the class on the playground and Alan gave his special teacher Miss Kim an enthusiastic "Yes!" when she asked if he had missed her.

Doc P had several conversations with Doc H2 on Wednesday about the treatment Doc H2 recommended but by the time we had our appointment with Doc P that afternoon, he had taken some time to consider Doc H2's plan and was not satisfied with it. He considered it to be merely palliative and thought we could achieve a much better result with drugs that have proven effective on Alan's tumor in the past.

He proposed a a mix of old and new drugs - Vinorelbine (15 minutes by IV), Cytoxan (60 minutes by IV) and Topotecan (60 minutes by IV) on Day 1-5, off for the rest of the 28-day cycle, then Vinorelbine and Cytoxan again this time with Doxorubicin (2 day slow IV) starting Day 1 of the next 28 day cycle. The Topotecan is from the same family as the Irinotecan that used to be so effective against Alan's tumor. Over time the cancer cells have become resistant to the Irinotecan (think along the lines of antibiotic-resistant bacteria) so Doc P is hoping that switching to Topotecan will do the job. We had used Doxorubicin in the first year of Alan's treatment, again to good effect, but it was dropped because it can be very hard on his heart and we were coming up to the limits of what we could safely use. Now we need to think about killing the cancer and taking care of his heart later.

This is pretty much #2 on Doc H2's list of options for systemic control of the cancer - a custom cocktail of drugs. Doc P having so much more intimate knowledge of the in's and out's of Alan's treatment was able to come up with a plan that we think Doc H2 was, if not too timid, then too conservative to. And let's face it, Doc P has been in the trenches with us for the last three years - it's a little more personal for him that he fight this thing as aggressively as possible.

We tend to favour Doc P's plan, but being the type who like to dot all the i's and cross all the t's, we asked him to discuss his plan with Doc H2, so they would be on the same page. We will come back to the office Monday for chemo - what regimen will be determined then. Poor Aurora - as the chemo nurse, she needed to know what drugs to have ready, but Doc P had to have a chance to talk to Doc H2 first. Nothing like living on the edge!


Alan and Miss Kim

MRI results and a new plan

The results of the MRI were not good. The tumor is larger, more involved with the spine, growing into the nerve route and starting to push on his right ureter and kidney. They can definitely tell that the tumor has been continuing to grow through this last round of chemo. Which means we are back to square one in Alan's treatment, again.

Doc H2 brought up three options for systemic treatment of the cancer. First, is a more experimental treatment - oral Cytoxin (Alan had previously had IV Cytoxin as part of the VAC protocol) and IV Vinorelbine, which has been used for rhabdomyosarcoma but there is no data on how well/if it works on unclassified sarcomas.

Second, he works to come up with a new custom cocktail of drugs, taking into account the biology of the tumor.

Third, we look for a clinical trial. Of course, this would mean a delay in starting the treatment while we look for applicable studies and get Alan qualified.

On the surgical side, Doc L had suggested cryoablation, where they would make a small incision and insert a needle into the tumor and inject it with something to freeze it to death. The inpatient recovery time would be fairly quick, just an overnight stay in the hospital. Doc H2 and Doc L will both talk to two different interventional radiologists to see if they will take on Alan's case.

Any surgical option will be almost pointless without a systemic solution to the cancer. Otherwise it would be like pruning branches off a tree with strong roots - the branches will just keep growing back.

So we'll take the first option for chemo back to Doc P to implement while the docs at MDA pursue the cryoablation.

Of course this was devastating news. We had high hopes that the chemo was working since we had finally seemed to get a handle on Alan's pain. Doc H2 said that if it was working, we wouldn't be needing to use the Fentanyl patches at all. He had called Doc P give him the results, and Doc P asked him to continue pressing the radiation oncologists to look more closely at Alan's case.

It was a short visit with Doc L to answer any questions we had about the cryoablation and to discuss removing the hip brace from the AFO. The two surgical options she considered were the cryoablation and radio-frequency ablation. Because the RFA heats up the tumor (not optimal in such close proximity to Alan's organs) and has not been regularly used in pediatric patients, she opted to pursue the cryoablation instead.

Rather than leaving right away as planned, we met up with the Smit's after our appointment with Doc L in the hospital lobby to process this latest news. They had been told by doctors back in South Africa that there was nothing they could do for Tristan, so they certainly understood what it was like to receive devastating news, and it was good to be able to lean on them for a while. The doctors still have treatment plans to pursue, so we aren't giving up hope.

MRI at MDA

The alphabet soup in the title just means we are in Houston for scans to see how well this new chemo regimen (Gemcitabine and Docetaxel) works on Alan's tumor. We checked into the Rotary House last night and had a relatively easy morning since we didn't need to show up at the Children's Cancer Clinic for his IV until 8:30. For the first time Alan did not wail when crossing the skybridge to the hospital.

They were running a little behind at the clinic so Alan got to smash some Play-Doh, build train tracks, and paint with his big brother Kevin while Mommy and Daddy visited with our friends the Smits. It was a stroke of good luck and great timing that this visit to MD Anderson coincided with Tristan's one year followup with the Proton Therapy Center and the Smit's trip from their home in South Africa.

The MRI went smoothly, though Alan took his own sweet time waking up from the Propofol. After an hour he was still seemingly snoozing, though he was aware enough to say "No" to juice, "No" to ice cream, but "Yes" to popsicle.

After lunch and a treat it was time to head back to the hotel for a family nap before going out to meet with the Smits. We will be back tomorrow morning to see Doc H2 and Doc L about the results of the MRI.


Alan loves smashing Play-Doh


Alan building train tracks while Tristan and his daddy Pierre watch


Kevin and Alan painting


Criss Cross Applesauce, watching Thomas the Train and waiting for the MRI


Kevin gives Alan a kiss

Office visit 2/17

02/17 11:56
ANC 1201

Another good day of blood return and counts. Got a new perscription from Doc P for the Fentanyl patches since the current batch has trouble adhering. He saw no reason not to continue our plans for Houston this weekend on our way to the MRI and appointments at MD Anderson next week. Still planning on the 3rd round of chemo next Thursday.

Off to Houston!

Office visit 2/13

02/13 11:57
ANC 2906

After a fairly uneventful weekend, we came back to the office for a post-chemo check-up. The counts were good and so was the blood return. Alan has had some sniffles (it's that time of year) so Doc P said to go ahead and give him some Benedryl.

Since the pinched nerve that has been causing his pain is from the tumor rather than something physically shifted, we asked if we could remove the hip brace from the AFO again. It would make some things easier and Alan enjoys the freedom. However, Doc P wants us to keep the brace on since the tumor is unstable and we don't want risk any injury.

Since things look so good we don't need to come back until Friday!

Office visit 2/9 Salvage Therapy Cycle 2 Day 8

02/09 09:49
ANC 2756

Today was Alan's chemotherapy with the Gemcitabine in addition to the second dose of Docetaxel. We started by settling onto our favourite couch and getting Alan's port accessed. There was good blood return, hello Mr. Blood!

It was the start to a long day. Doc P has a new chemo nurse, Amber, and things took a little longer as she got used to things around the office. Unfortunately Alan also threw up twice - once when they started the IV fluids and once when Aurora pushed the steroid Dexamethasone. This delayed the start of chemo, but luckily Miss Fiona from the MOMS Club was visiting with us today. She helped us clean up and washed the dirty clothes in the washer that Doc P has in the storage closet across the hall from our room.

After throwing up, Alan ate well - lots of puffs, IKEA KEX cookies and goldfish. Whatever caused the vomiting, it didn't come up again, even though we were on pins and needles every time he started getting upset while getting the rest of his pre-meds - the rest of the Dexamethasone, Toradol, Zofran, and Benedryl.

We finally started the chemo infusion at 12:30. The Gemcitabine went smoothly, with no problems. When the Docetaxel started the nurses set a timer at 15 minute intervals. They were starting the Docetaxel slowly to make sure there was no adverse reactions. With each check point they increased the flow rate.

With the vomiting, Doc P gave Alan some Ativan to settle things down. Between the Ativan and the Benedryl, Alan was very sleepy but he fought napping so hard. He would nod off, then shake himself awake repeatedly. Fiona started laughing because at one point he actually smacked himself on the head to wake up!

The Docetaxel was infused with no problems, so Aurora gave him one more dose of Dexamethasone, Benedryl and Zofran by IV before removing the needle from the port. The Benedryl and Zofran help settle his stomach and giving him the meds by IV mean less we have to give him by mouth. It was several hours since the last time he threw up, but a gag reflex is a sensitive thing. Better safe than sorry!

It was a long day, but Alan was a trooper, playing with Toca Robot Lab and watching Nickelodeon. He was happy to head home where he finally fell asleep! Doc P wants us back on Monday for counts.

Kicking back

We came back to the Children's Blood and Cancer Clinic today for a blood transfusion. We haven't been here for over a year, but there were a lot of familiar faces as some of the nurses and support staff from the 4th Floor HEM/ONC ward were now at the clinic. Two and three years ago we would be put into a private room since we had to keep Alan in a Pack'n'Play or corralled on a couch. Alan's a big boy now and he sat on one of the little recliners we had noticed the first time we came in for a transfusion.

Alan covered himself with Sponge Bob Squarepants stickers while the nurse pushed his pre-meds - Tylenol, Benedryl, a steroid, Lasiks, and Zofran. There was a little delay because the bag of blood sent in was so large. The nurse was not sure if Doc P wanted Alan to have the entire volume and if so, we would need to stay longer otherwise the rate would be too much. We ended up starting around 12:40 while the movie Cars played and Alan munched on goldfish crackers.

He had drifted off to sleep while kicking back in the kiddie recliner when Doc P called back - the volume of the blood in bag varies from unit to unit and apparently the one they gave Alan was a rather large one. So we finished the transfusion at 2:00 and headed home, with Alan still asleep.


Carefully placing the Sponge Bob stickers


Sleepy time!

Office visit 2/6

02/06 11:46
ANC 3096

The white count is good but his red counts are low. We will be back tomorrow for a blood transfusion at the Children's Blood and Cancer Clinic. That will give us a day to recover for chemo on Thursday. Otherwise Doc P was happy with how perky and active Alan was now. He confirmed that we had filled the prescription of Dexamethasone, the steroid that we need to start giving Alan the day before the Docetaxel. We will give him two pills twice on Wednesday.

Pain Management III

After two three-day periods with two Fentanyl patches, Alan has been doing well after stepping back down to a single patch. Between the two patches and being sick, Alan had been very sleepy, napping through the day and unable to keep up at school for more than a couple of hours.

On Friday, despite being the day after chemo, Alan was able to stay for his full day at PPCD - that's being picked up for the bus at 7 am until 10:30. His PPCD teacher shared the following on Alan's Angels:

We were so happy. He has 6 momma bears watching over him at school! lol! We were thrilled with his day! We have got the balance - I think, of watching him carefully and not hovering. It is hard not to scoop him up and do everything for him. However, he wants SO much to do it himself and really won't let us do it for him. He really likes being another kid blending in with the other kids in class. That is priceless to see. You really can't spot him when you walk in the room because he is in the thick of it with his buddies. It is just lovely:)

He's been perky, even feisty to the point of trying to grab the doorway to keep from being carried into his room for bed time. Another sign that he is feeling better is that he is resisting when we give him the Gabapenten. When he was in severe pain he would welcome the syringe and even pull it into his mouth.

The fact that we can control his pain with a single patch and the Gabapenten without any Hydrocodone is a hopeful sign that the chemo is working on the tumor. Even more hopeful is that we have our happy boy back. He's been playful and happy and he's even trying to walk again. It's great to see him literally back on his feet!


Out for lunch, Alan counts all the choices on the menu.


Alan kicking back and watching the Super Bowl. All those numbers on the screen were fun!



Making a Valentine's Bag at school.

Office visit 2/2 Salvage Therapy Cycle 2 Day 1

02/02 09:05
ANC 3983

It was an early start to the day. Alan would only be getting one drug today, Gemcitabine, but Doc P had us scheduled for the whole day, just in case. We started with a small bag of the premeds and a push of Toradol, a flush and then the chemo. Alan was happy to watch Nick Jr. all morning and eat his IKEA cookies. He seems a little annoyed when the chemo infusion started, but otherwise things went very smoothly. Miss Lesley, a friend from yoga, the neighbourhood AND the MOMS Club, came to visit during chemo.

We finished Alan's treatment with a flush and some fluids and then headed home. He was so sleepy as we were packing up and was fast asleep when we got home. Doc P said again how this somnolent boy was not our typical Alan so this afternoon we replaced his Fentanyl patches with just one patch. Hopefully that will be enough to keep him comfortable.

Office visit 2/1

02/01 09:10
ANC 3107

It was a quick check up today to be sure that Alan is good for chemo tomorrow. Alan's counts are fine so we are go for the start of Cycle 2. The culture taken on Monday ended up yielding a very common skin surface bacteria so his fever last weekend was just a simple cold or flu. He's completely over that now.

We talked about how sleepy he's been so Doc P wants us to cut down the Fentanyl patches when he gets his next dose tomorrow afternoon. The patch he's on is the smallest dose, but we can cut a patch in half if necessary. When his current patches run out tomorrow we'll replace them with just one and see how he does. Hopefully that will be enough to control his pain and he can be more perky like his normal self.