A late arrival to the RMH

We finished Alan's transfusion around 5 PM. The good news was that we weren't going to hit Houston's rush hour on our way in. The bad news is we had to deal with San Antonio's rush hour on our way out! It took almost 4 hours for us to get to Houston, but the good news was that while we were waiting for the transfusion, we got a call from the manager of the Ronald McDonald House in Houston around 4 PM that a room was available for us! They were completely full when we called in the morning - we could call at 2 PM to see if anyone had checked out, but with Alan's transfusion we never got around to it. So the silver lining to the transfusion was our room at the RMH - if we had headed straight to Houston with no delays we would probably have already checked into the hotel by the time the RMH called us.

Because he slept through the transfusion, Alan was awake through the whole trip, often peering out the window at the moon which he could see overhead. We rolled into the RMH parking lot shortly before 9 PM and he was giddy with excitement when we took him in. He LOVES the RMH with the massive toy room and the three flights of stairs to climb. Since he had slept this afternoon and was going to be NPO at midnight, we let him stay up and play. When he finally came up to our room, he climbed straight into bed. What a day!

Office visit 4/30

04/30 11:50
ANC 206

That is not a typo, Alan really does have a three-figure ANC. Not only did his white count crash over the weekend (the ANC was 1400 on Friday), the red counts went down too (only 8.7 - Doc P likes it to be 10 or higher). Patsy wasn't surprised by the numbers, since she thought Alan was looking quite pale, so she gave us four doses of Neupogen for the week (one of which they gave him before we left the office) and orders for blood. So instead of coming in for quick counts and then hitting the road for Houston, we went to the Children's Clinic for a blood transfusion.

It was over a two hour wait for the blood to arrive from the hospital and we didn't start the transfusion until after 3 PM. It will take almost two hours to transfuse the 200 ML that Patsy prescribed. We went to the toy room in the clinic to wait for the blood while one of us went out to grab some lunch. With Alan so neutropenic we didn't want to take him to a restaurant and since it was going to be such a long afternoon he might as well has some fun while we waited. Ironically, he had a great time playing with some toys we had donated to Child Life last year in our little friend Collin's honour.


Playing at the doc's office while waiting for the Neupogen and orders for the transfusion.


In the toy room at the clinic.


Snoozing through the transfusion.

World Wish Day 2012

Today we went to Morgan's Wonderland to celebrate World Wish Day. Though Alan hasn't received a wish yet, we went to cheer on Doc P who was being honored for his work as a medical partner and volunteer. As a pediatric oncologist, he obviously knew a lot of wish kids and they joked that the opening ceremonies had to be delayed because Doc P was busy hugging everyone.

Grandma had arrived this afternoon to take care of Kevin while we're in Houston for Alan's appointments at MD Anderson, so she was able to come and play with the boys and meet some of the people who take care of Alan. It was fun to see some of our nurses out of the office, though it took a second look to recognize some of them without their scrubs! We also got to see Nick's little sister and parents for the first time since he passed away in the fall. There were a lot of hugs exchanged - we miss Alan's big buddy and will be lighting a luminaria for him at the Relay For Life on Friday.



Doc P accepting the Trooper Award


Alan cruising the amphitheater after the opening ceremonies


Alan all wiggly with Doc P


Getting ready to explore the park


Dropping coins in the wishing well


Wave to Mommy, Grandma and Kevin!


Kevin taking Grandma for a drive.

Office visit 4/27

04/27 09:51
ANC 1408

After a week of good blood returns, we had some difficulties this morning. It turned out that the needle had dislodged so we had to start with a new one. Then it was time for the pre-meds. Since it was the end of the week there were only three other chemo patients so we had the whole room to ourselves. Good since Kevin had the day off school and we needed the extra room for family time!

The two of them were cute sitting on the bed together watching Spongebob, but the week was catching up with Alan. He usually fights off the Benedryl  (we've seen him slap himself to stay awake or hold his eyes open with his fingers), but today he lay down for a nice long nap while Kevin did some homework.

Other than the hiccup at the beginning of the day with his needle, the rest of the day went smoothly, and we were soon on our way home in time for speech therapy. We will be back on Monday for counts before we head off to Houston for scans.


Kevin following Claire down the hall to take vitals.


Alan finally naps...

Office visit 4/26

04/26 10:35
ANC 1817

 The Spongebob marathon continues. It was quite busy in the office today, so it took a while before Alan's pre-meds were even hooked up. Everything went smoothly but it was a long day.

 
Alan kicking back with his Aquadoodle

Office visit 4/25

4/25 10:22
ANC 1115

Day 3 of chemo and the Spongebob Square Pants marathon continues. Alan has had no interest in the Nick Jr morning line up but Miss Krysia came to visit today. Alan showed her his favorite new apps, Toca Kitchen and Toca Kitchen Monsters, which she looked up on her phone. Things went smoothly and we were home to see Daddy soon.


Miss Krysia snapped this picture of Alan and his snack smorgasbord

Office visit 4/24

04/24 10:15
ANC 1374

Miss Becky came to keep us company on Day 2 of chemo.  The office was much quieter which, combined with the earlier appointment, meant we were done much sooner. Today it was just Topotecan and Cytoxan, as it will be for the rest of the week. Alan showed Miss Becky some of the new apps on his iPad and snacked through the day. The Spongebob marathon continued until we were done.

Office visit 4/23 New Chemo Cocktail Round 3 Day 1

04/23 11:30
ANC 1566

Today marks the start of the third round of Alan's new chemo regimen. The office was very busy so it took a while for a chemo nurse to get even the pre-meds started. Our friend Angela was here to keep us company though. Since it was so busy, Doc P just popped in to give us a thumbs up on Alan's counts so we could go ahead with chemo.

After the push of Vinblastine, the Topotecan and Cytoxan infused without incident. Alan had lots of treats from Miss Angela on top of the usual snacks that Mommy brought. Alan especially loved the gummy worms and the Nerd-covered gummy rope. After a few shows on Nick Jr., Alan asked for Spongebob so Mommy popped in the DVD, which played for the rest of the day. The Benedryl in the pre-meds made him a little woozy, but he fought sleeping. Miss Angela even caught him holding his eyes open with his fingers!

We didn't start the infusions until almost 12:30, so it was pretty much the end of the day once we were done. We had a later appointment this morning so Alan could go to school (the only day this week he would able to attend). Our appointments for the rest of the week will be earlier, so we won't be stuck going home through rush hour traffic.


Oooh what yummy treats are in this bag?


mmm gummy worms!

Office visit 4/16

04/16 11:50
ANC 2868

Just a quick visit for counts today. Doc P was happy with the results and we double-checked our plan for chemo next week. Alan is off for the rest of the week, which means he's free to go to Chuck E. Cheese for some fun!

Since it was such a quick visit, we had time to check out the new playground at our library on the way home. Alan was quite excited to get out and play, and we've been noticing how much more walking he's been doing in the last week. We'll make sure to take Alan out for some fun this week since he'll be cooped up all next week for chemo.


Alan is climbing again!


After all that hard playing, Alan cuddles with Mommy and the iPad.

Office visit 4/9 - PJammin results

04/09 11:20
ANC 1341

A quick visit this week with Doc P back in the office. Alan's blood return came quickly and the counts were good, so we have the rest of the week off! At least from trips to Doc P - he OK'ed Alan's trip to the dentist on Wednesday. Friday will be a field trip to Morgan's Wonderland!

Last week's PJammin event at the boys' school was a big success! With approximately a thousand students and a hundred staff members, there was great participation as they raised over $1300 for the American Childhood Cancer Organization! I was especially touched our friend Angela's story - not only did her son take his donation out of his own money and doubled the minimum $1 contribution, he hit her up for matching funds to give! Even though he didn't want to wear PJs to school, he insisted on donating since he lost his grandfather to cancer three years ago. And he never forgets to wear his Alan's Angel bracelet! We are so grateful to have such a supportive community.


Big brother Kevin was ready to go in rocket PJs!


Alan was ready to go Sponge Bob!


Alan helping count the donations.

Office visit 4/6 - Three years ago today...

04/06 12:45
ANC 1249

Today we saw Doc A, covering for Doc P on this holiday Friday, for Alan's counts. It was a rather long wait but Alan played on the iPad and they delayed accessing his port until Doc A was almost ready to see us. The blood return was good today, so it was nice that something was going smoothly! While we were waiting, Judy went to a neighbouring room to see Bailey, one of Alan's fellow cancer warriors. Not only do Alan and Bailey share a birthday, so do Judy and Bailey's mom. What a small world.

Alan's counts were good, so Doc A was pleased. Alan still had a chesty cough from the allergies and not only would it upset him, but the force of it would sometimes stimulate his gag reflex, causing him to spit up. Doc A recommended a pediatric formulation of Mucinex (Guaifenesin) to help him out.

This is the day three years ago that we found out that Alan had cancer. Two major surgeries, countless chemo regimens and two relapses later we are still fighting. Alan has been a real trooper through everything, and we are encouraged by recent developments. He has been off painkillers for two weeks now (a good sign that this latest round of chemo may be effective). In the last week we have noticed he has been walking around the house more, even though he still rides for long distances at school. His mood has definitely been better since the pain that indicated the return of the tumor started in December. If anything, he's been quite feisty and quick to assert his wants (usually candy). We will see Doc L in May to see what progress has been made on Alan's surgical options. Hopefully we can lick this tumor for good.

Friends Crushing Cancer

It's been three weeks since Harold shaved his head for pediatric cancer research and the hair has already grown back in! The first few days were funny for him, automatically reaching for the shampoo or brush before he remembered he didn't need it. The funniest moment was trying to pull on a t-shirt the first morning and having it catch on the stubble and stick to his head like velcro!

The fight continues though, as I spent this morning helping my friend Becky sell raffle tickets at the Cancer Center Council's Spring Luncheon. It really resonated when the Director of Patient and Family Services spoke about the juggling act that cancer patients have to do to keep day to day life going. We've been juggling for three years and it was another reminder to be thankful for everyone who has made it possible to keep all those balls up in the air.

The Relay For Life is coming up in May and our team's big Bunco and Silent Auction fundraiser is on Friday, April 20 at 7:00. If you're in San Antonio and would like to have a fun evening and support the American Cancer Society at the same time, please let me know and I will e-mail a copy of the invitation. Harold is planning a second round of Rockets for Relay as another fundraiser for the team during the event.

We have a lot of friends doing their part in the fight against cancer too. Thanks to Alan's teacher Ms. Anna, Hardy Oak will be PJammin later this week. The children at the boys' school have been donating a dollar in order to be able to wear their PJs on Thursday. A trio of fifth grade girls have been working for weeks decorating the collection boxes for the classrooms.


Collection boxes for PJammin Day at Hardy Oak

Our dear friend Sara will be walking in the Dallas Cure Search Walk for Children's Cancer on April 14. She has been tireless in supporting us and we appreciate her efforts in raising money to fund ongoing clinical trials in Alan's honour. Also on April 15, my yoga friends Daniel, Mason and Mark will be holding a benefit concert, Chords of Hope, to provide funding for breast screenings to low income, uninsured women.



Our friend Trevor has participated in the Ride to Conquer Cancer, a two-day cycling event from Vancouver to Seattle, two times already. At this year's event in June, not only is he dedicating his ride to Alan, he is directing the money he raises towards research on childhood cancer. Thank you Trevor!

Office visit 4/2

04/02 11:55
ANC 3018

It was a pretty quiet weekend, since Alan is pretty photo-senstive from the Gabapenten and chemotherapy. He and his big brother have had runny noses for the last several days, but since there was no fever or coughing we weren't concerned - we figured it was just allergies. However, Alan started coughing Sunday afternoon, which had us worried since they were pretty deep, shaking coughs. Alan would get pretty annoyed every time he coughed.

Alan didn't sleep well Sunday night because of the cough so we kept him home from school. He was so tired and was still coughing so we wanted him to have a chance to rest and recover before we went to his appointment with Doc P.

For a change, his blood return was excellent, with Mr. Blood showing up lickety split! The counts were good, with the red count just a tiny bit low but not enough to worry about yet. We talked with Doc P about Alan's cough and he was not concerned. The allergies would have caused post-nasal drip which caused the cough, so we'll give him Benedryl. Hopefully the cough will resolve quickly.

We also had Doc P have another look at Alan's incision. The swelling has eased, but we've noticed a line that looks like the suture coming to the surface. We are keeping a close eye on it but Doc P agrees that it would be better for the surgeons to take care of it preemptively before it breaks the skin. We will contact Doc L's PA for her opinion on how to proceed.

We will be back for counts again on Friday.