Transfusion

As planned during yesterday's office visit, we came into the Children's Cancer and Blood center for a blood transfusion before the Thanksgiving holiday.

Kevin came too so we could all spend time together. Alan once again chose to hang out in the playroom, watching the Sesame Street numbers DVD and going through all the different toys. Near the end of the transfusion he was getting a little tired, so we brought  one of the kiddie recliners over so he could sit back and watch TV while we finished up.

Office visit 9/26

ANC 1954
09/26 10:00

We started early since we knew we might have to have a blood transfusion today. Sure enough, Alan's hemoglobin count was down to 8.6. We headed over to the Children's Cancer Clinic after our visit with Doc P. After the vitals it was off to choose a spot for the next several hours. Alan was not interested in on of the kiddie recliners. Instead we went to the play room, where he found some new toys and we found a number-themed Sesame Street dvd to play. The transfusion went smoothly, so we were on our way home for dinner in no time!

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.

Back at MD Anderson

We are at MD Anderson this week for pre-op appointments. Today was anesthesia assessment for the CAT scan tomorrow and Thursday's MRI. Alan was a little mooch who charmed some potato chips from a fellow patient in the waiting room. I got him to sit down to play with his play-doh and the nurse taking his vitals showed him how to roll it into balls. He found that very amusing and rolling little play-doh balls kept him occupied for a while. The meeting with the anesthesiologist was pretty straight forward - Alan has never had any problems.

The rain was holding off, so rather than wait for the next shuttle bus we walked back to the Ronald McDonald house, where Alan played outside. After an attempt at a nap, we went downstairs for dinner, where Ronald McDonald was visiting. Alan munched on a cookie while Ronald did magic tricks. Then it was time to hang out in the toy room for wagon rides with the other kids before bedtime. It was nice for Alan to have a fun evening, since tomorrow will be busy with the CAT scan.


Alan and Ronald


A wagon ride through the toy room

Another MD Anderson consult

We are back in Houston to meet with another surgeon who will be part of Alan's team - this time the plastic surgeon who would be doing the reconstruction work. There were two major scenarios we discussed.

First, in the unlikely event that Doc L decides she needs to do a hemi-pelvectomy after all, Doc H's team will be reconstructing Alan's hip. This would involve taking his fibula and using it to bridge the gap, including micro-surgery to attach the blood vessels from the graft bone to his hip. This part of the surgery would take 6-8 hours, but it will be determined early on if it is necessary, so Doc H's team can start in Alan's leg while Doc L and Doc HJ's teams finish with their parts. The blood vessels will need to be closely monitored for the first 48-72 hours after surgery to be sure the blood is flowing through them. This means his recovery would start in the ICU, where the proper monitoring can take place.

Doc H's fellow who went over this procedure with us assured us that losing the fibula would not severely impact Alan's mobility, that it was a common procedure to use that bone in reconstructions. While they do not do many hip reconstructions (about two a month) the blood vessel reattachment is done very often, as is grafting the bone in other parts of the body. The tricky part of this, aside from the fact that Alan is three years old, is that the reconstruction site is inside his abdomen.

The second scenario was the reconstruction of Alan's abdominal wall after the surgery. This would involve using a collagen mesh to prevent a hernia and possibly using one of the abdominal muscles or one of the quadriceps. Since Alan had recovered so quickly from his tumor resection in January, we hadn't realized the extent of reconstruction needed, even without the hemi-pelvectomy. We started thinking about the extent of PT Alan will require after the surgery - he's already lost part of his psoas muscle to the tumor so we were concerned about the impairment of losing quadriceps muscle too, since he has been using them to compensate. However, as Doc H had to point out, we are trying to make the best of a bad situation - this is the cost of going after the tumor more aggressively.

Office Visit 10/28

10/28 9:02
ANC 1217

Alan had a good night last night, but we knew today was going to be a long day with the blood transfusion, so we went in early for chemo.

This time, after we were done, we went to get the blood transfusion, and the time from the end of chemo to the beginning of the blood transfusion was much shorter...a lot less waiting time.

But Alan was not happy...ironically he would get upset more after a nurse left than before...I guess he thought he was done every time the nurse would come in. Turns out he was simply tired and didn't want to sleep. He literally cried through all of WALL-E and fell asleep for all of 10 minutes...before the nurse came in for his vitals and woke him up again!

However, that little catnap improved his mood considerably, and we watched WALL-E again in its entirety and we actually got to listen to the dialogue this time!

One day left!

Alan at the clinic - Master of All He Surveys

Office Visit 9/30

09/29 10:09
ANC 1515

Day 4 of this week's chemo treatment. Little man did well on this one as well...we hung out playing with my phone. However, since the weekend was coming up and his red counts were a little low, Doc P decided he needed a blood transfusion. However, the clinic we were going to do it at wouldn't be able to give us the transfusion on Friday, so we decided to do it today.

He was okay, right up until he saw the IV bag...and he figured out he was going to be here a while.

He was not happy! Cried laying back on the couch, with his fingers in his ears (maybe he didn't like the echo)? But he was tired plus he had a little help from pre-transfusion Benedryl, so he was a little sleepy. It still took him about 45 minutes to fully fall asleep, partially because he didn't want to sleep...and partially because the IV machine kept making an annoying noise every few seconds that kept waking him.

Of course, 15 minutes later the nurse had to come in to take vitals...waking him up again.

(sigh)

But, even the short nap improved his mood considerably. We spent the rest of the time watching Baby Einstein on the PSP and eventually left 6 hours after we arrived for the original chemo. The pre-transfusion steroids have been picking up his appetite a bit. A long day, but now Friday will hopefully be short.

Office visit 8/12

08/12 09:10
ANC 972

It was an early start today, since Alan would be heading to the clinic for a blood transfusion after being administered the Irinotecan at the doctor's office. Alan is definitely irritable while the chemo is infused, but luckily it only takes 90 minutes. The big change today was that Alan actually ate the lollipop he got from the receptionist's desk at the doctor's office! Lick, lick, lick, until it was all gone!

At the clinic, they did not have a room available, so Daddy kept Alan contained in his stroller for the blood transfusion. He was not at all happy with that, and as you can see from the photo below, he was quite happy when he was finally released. Since he had the transfusion, there was no post-hydration today, and he got to go home untethered. The needle is still in the port though, so he hasn't been able to have a bath this week (and forget about swimming!). This makes him rather cranky at bedtime when big brother Kevin goes off to splash in the tub. Only two more days to go for this round of chemotherapy.


Alan is free on the skybridge

Clinic trip for transfusion

Since Alan's hemoglobin counts were so low yesterday, we showed up bright and early at the clinic today for a transfusion. It was nice to see some familiar faces from the PED/ONC ward that were now working in the outpatient clinic. Several of the nurses and PCAs exclaimed how much Alan had grown and how tall he was.

Alan started off pretty quiet, sitting on the floor with toys and watching a video (he was so snoozey with the pre-transfusion Benedryl I thought he might fall asleep) but once the transfusion started he was quite upset. Nothing seemed to make him happy and while I was changing his diaper he pulled the needle loose. This time instead of merely dislodging the needle, he pulled it all the way out and the dressing half-way off, which caused a big mess and gave me a minor heart attack. The nurses came running to fix it quickly and Alan was much happier with the new needle. The nurse said the needle he pulled out was bent - it's hard to know whether it was bent by him pulling it out or if it was bent before.

Once the new needle was in, Alan was quiet once more, and a little clingy. We sat on the sofa while reading books, watching the cars go by in the parking lot, and nibbling on snacks (though the saltine cracker was crumbled rather than eaten). The rest of the transfusion went smoothly, and the nurse helped me give Alan his Neupogen shot for the day before we went home.

Office visit 10/1

10/01 09:05
ANC 429

After counts at the office, we headed over to the Children's Blood and Cancer Center for a blood transfusion. We had to wait for a room so we started out in the infusion bay, surrounded by the tiny recliners. There were a few nurses and aides there today from the HEM/ONC ward and they were happy to see Alan walking around and so happy.

Alan was cranky trying to rest with the hustle and bustle so we were happy when a private room opened up. Although he a little happier to be in a quiet room, he was still pretty restless and didn't nap this afternoon. When we were done, it was straight home, dinner, bath and bedtime!

We're at Day 10 after chemotherapy, and right on time, Alan's white blood cell count has nosedived. So although we don't have to go back to the office until Monday, Doc A sent us home with Neupogen for the weekend.

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.