Port removal with hiccups

This morning Alan went down to OR for surgery to remove his port. Miss Sheila from Child Life came to keep him entertained while we waited through all the preliminaries. She had a white "bunny suit" to go over her clothes so she could go all the way into the OR with Alan. Unfortunately Mommy had to say good bye in the hallway.

Holly came to see us in the surgical waiting room about half an hour in to the procedure to tell us that the tubing from the port had adhered to his vein, so surgeon had to make an incision in his collar bone area to be able to get it loose. That meant they couldn't run a CVC there, so they would put a PICC line in his other arm instead. However when they put it in they couldn't get a blood draw, so it came out. They left the old PICC line on the right arm instead of replacing so they don't risk losing access and also put an IV in his right hand. We just can't seem to catch a break, even on something that should be a standard procedure.

Alan bounced back from the procedure pretty quickly, enough that he could work with Lindsay the OT. We also replaced the Fentanyl patches with a single 25 mcg/hr patch this afternoon. Because of the incision in his left arm from the PICC attempt, we have to do BPs on his left leg now, which makes readings for whether the Labetalol is needed difficult. A BP taken on the leg will read higher than one on his arm, but there is no definitive way convert what that reading would have been if taken on his arm so the nurse will have to make a judgement call.


Darci blowing bubbles for Alan while we wait for Transport


Miss Sheila in the bunny suit to go into OR with Alan and the "pink iPad"


The iPad is now the world's most expensive tray

Back into IR for tube-work

Alan woke up a few times but went back to sleep on his own. The first cycle of chemo ended in the early hours this morning. He spiked a fever at 4 am so he got Tylenol and the nurse took cultures (last positive culture was the one taken on the 7th). She couldn't get blood return from the port so they will try again after they replace the needle during this morning's procedures and dressing changes. The nurse practitioner Gina came in and we asked to to look at Alan's fever profile. We'd like to know if Alan's fevers tend to come after his port is flushed and an infusion is started. Since his chemo ended this morning we can avoid using the port and put the TPN through one of the PICC lines instead.

Down in Interventional Radiology, we were pleased to see that Doc T (who did his cryoablation) would be the one re-suturing the G-Tube. The t-tach can be removed at the 7-10 day point so we told her to go ahead if it looked good. We told her that the right nephrostomy was leaking so she will check both tubes as well as re-suturing the G-tube. Since he is being sedated they will change his PICC and port dressing that are due today. His nurses from the pediatric floor came down to take care of those once he was asleep, since Doc T wanted those done before she cleared a sterile field for the G-tube procedure and then flipped him to check his nephrostomy tubes.

It took a while longer than we thought it would. It turns out Doc T decided to replace his nephrostomy tubes. The leak on the right tube happened because the loop at the end of the catheter that holds the tube in place had moved. The loop has holes in it and because Alan is so small, having the loop slip out just a little meant that one of those holes had come out of his kidney, causing the leak. She replaced them both and looped it smaller so hopefully it will stay in place better. The tubes need to be replaced every two to three months anyway (crystals forming in the tube can cause blocking and possible infection so we will keep an eye out for that) so with today's new tubes reset the clock.

While he was recovering in the PACU where he made Daddy blow bubbles for him, his PPCD teacher Miss Anna and Miss Janelle arrived for a visit! When we got back to his room, he got to open up a bag of presents from his friends, teachers and staff from school and Miss Anna read him a story.

After Miss Anna and Miss Janelle left, the PT Miss Denise came for a session. Alan sat, kicking his feet well, and stood for a little while. Afterwards, we went up to observation deck with Kyle to check out a cool computer set up that one of the Child Life art teachers had for the patients to play with. We made an appointment for Alan's turn next week. Then it was time for another walk and Alan asked for pretzels at the gift shop. He even ate two of them!

This is the second day of minocycline lock in his port, then he will get TPA so we can get blood return from the port (the nurses were not able to get blood return with the new needles this morning even though it flushed). Once it's done we can get a culture before the TPN and lipids go in for the night. Now that chemo is done we are hoping that the TPN and lipids can go through one of the PICC lumens instead so we aren't flushing the possibly infected contents of his port through his body for 10 hours every day.

We talked with one of the docs from Infectious Disease about how the port has been getting more and more difficult to flush and get blood return. The ID doc said that over the last three years Alan has been growing and that has meant things shifting around the port.

Alan had two poops today, one changed in IR during his procedure and another in the afternoon after getting back from the observation deck and then a third poop in the late evening. As always, we are encouraged by all signs that things are in working order.


Watching his vitals while waiting for Doc T


Opening presents with Miss Anna


Slam! and the ball lights up!


Alan with Miss Anna and Miss Janelle


Cuddling with Daddy


Working hard with Miss Denise


Sleepy!

Weekend in the ICU

It has been a very busy weekend. After a night on the pediatric floor, we headed off to Interventional Radiology on Saturday morning so they could put tubes in Alan's kidneys to relieve the pressure. The IR resident came to tell us about the nephrostomy - they would do an ultrasound to see how the kidneys were this morning and that would determine what tubes they would put in. The right kidney would definitely get a tube; the left one would get a tube if it was swollen as well. Otherwise, they would put a tube in the bladder to help it drain. Either way, Alan would be getting two tubes. They would be using the ultrasound to guide the needle and then stitch the tube to his skin, covering with a bandage. Then we found out that Alan would be going to ICU following the procedure, rather than the PACU or the pediatric floor. We were not expecting that, since the last time we dealt with Interventional Radiology we went to the PACU for recovery and then the pediatric floor for observation overnight. Between the possible bowel obstruction and his high blood pressure, the docs wanted Alan to be under closer monitoring. Luckily, since the pediatric floor wasn't full we didn't have to completely move everything out of our room.
In the waiting room, the resident came out to tell us that both kidneys were swollen, so Alan would be getting the tubes in his kidneys. This will divert all the urine away from the bladder, so hopefully we can remove the foley catheter soon. There was some discussion about doing a CT for Doc HJ, but since Alan had a bowel movement that morning, they decided to wait and see rather than give him another scan.

Since we had only anticipated being away for two nights, Harold went back to San Antonio to get Kevin settled for a longer stay with friends and pack more for the rest of us. Judy stayed with Alan in ICU, speaking with Doc HJ and Doc H2. Doc HJ talked about the possible obstruction. Since Alan was sipping water with no problem by Saturday night, she was hopeful that they could turn off the suction on his NG tube to see if things were moving again. They would take an x-ray to see how things looked.

Doc H2 was happy to see that we were able to manage Alan's pain. The Fentanyl via PCA that had worked so well for Alan after his last surgery wasn't doing much for him this time. By 2 am after consulting with the Pain Service, we switched Alan back to morphine. That seemed to do the trick and by Sunday morning his blood pressure was much better. When Doc H2 came to check on Alan she pressed him on the next step after radiation, since we can't expect any more from the radiation treatment than slowing the tumor's growth. He talked about some of the clinical trials that he has been looking at for Alan, including the one involving amino acids, which happens to be run by Doc H3 who was the attending pediatric oncologist this weekend.

Because there is no food and no cell phones allowed in the ICU we were hoping to move back to the pediatric floor on Sunday afternoon, but Alan's blood pressure continued to fluctuate. The ICU pediatrician wanted to hold Alan one more night, but if things continued to stabilize he saw no problem with us returning to the pediatric floor on Monday.

It has been an exhausting and frustrating whirlwind of a weekend, but the important thing is that Alan is comfortable right now and everyone is working on making sure he stays that way. We also want to take a moment to thank everyone who has rallied to support us over the last few days. The texts, payers, posts on our Facebook walls and on Alan's Angels, the gifts and help have been a much-needed practical, emotional, and spiritual boost. Thank you all, so much!

Cryo started

We arrived at MDA bright and early this morning. Alan was a little upset when we turned into the hospital's drop off lane but he was calmed down to read his Sponge Bob book (thanks Miss Sara!). After changing into a gown, Alan was settled into the prep area with warm blankets. He was playing "Where's My Water?" on his iPad when Sheila from Child Life came with a box of toys and her own iPad. Of course, since someone else's iPad is always more fun, Alan practically tossed aside his own iPad to play with hers. He had a lot of fun with a new-to-him game, "Cut The Rope" while Sheila and Doc T marveled at his skills.

Doc T and the anesthesiologist had some more details on today's procedure. They will be do at least two passes of cryoablation, one anterior and one posterior, so they will be flipping Alan part-way through the procedure. This means anesthesia will be incubating him and they may replace the needle accessing his port with an IV line when they lay him on his chest. Each pass of cryo takes about 30 minutes so between that, the anesthesia, and the neurology monitoring the entire procedure will probably take three hours.

The anesthesiologist gave Alan some oral Versed, hoping he would drift off before they took him away. Unfortunately he developed the hiccups which kept him awake, so Judy (and Sheila, since Alan was keeping a tight hold on the iPad) went with them to the CT room. Judy lifted him onto the exam table and they gave him gas by mask. Judy gave him a few kisses then went back to the waiting room. Hopefully we will have an update in three hours.


Gowned and ready to go


The pink iPad from Child Life


Almost time.

MD Anderson testing day #2

Alan had a very restless night, probably due to congestion. There's no fever or cough and when the anesthesiologist checked his lungs they were clear so it's probably just allergies. I bundled him off in his PJs across the skybridge to the hospital, leaving Kevin with our friend Aimee who had come last night to help out since Harold had to head back to work last night. Alan was not happy to make that familiar trip into MD Anderson, especially since he wasn't allowed to have anything to eat or drink.

After checking in with Diagnostic Imaging we went to Infusion Therapy to have his port accessed. Then it was back to Diagnostic Imaging where we changed Alan into a hospital gown when a bed in the pre-op ward opened up for us.

The Interventional Radiologist, one of the doctors who would be doing Alan's needle biopsy, came by to see Alan and answer questions. The procedure itself would take about 20 minutes, though they would have him for about an hour since they had to prepare him for anesthesia (that would take longer than the biopsy itself). They would use a series of CAT scans to guide the needle for the biopsy, and the doctor said he would just have a little pain at the site the needle was inserted, with no more recovery than if he got a shot.

The anesthesiologist came by to introduced herself. I asked if Alan's congestion would be a problem, but with his lungs clear that wasn't an issue. Now it was just time to wait. Alan had been happy to play with the wooden puzzle game on the Touch Pad, his calculator and his AquaDoodle for a while, but he started to get bored. We started to play "Alan's Turn, Mommy's Turn" with the penguin mask, with Alan charming the nurses, another patient across the room, and the ladies from Child Life who came by to see how he was doing. They came back with some new toys to hold him until they wheeled him off.

Alan was curled up under warm blankets when he came out. We were put into our usual room at the end of the PACU. He snoozed away happily for a while, but was quite cranky when he woke up. He acted like he was in pain so we gave him a little more fentanyl. He refused juice or milk, but he perked up when we offered him ice cream. They had some popsicles sent down from the pediatric floor and he was content to lie down and lick away at his popsicle, and then a second. He asked for a third but since he was obviously feeling better there was no point in taking up a bed. It took a while to clean up the sticky mess and get him dressed, but then it was time to head over the skybridge to back to the hotel and then meet up with Kevin, Aimee and her kids Gavin and Gwendolyn. We braved the crowds at Hermann Park for a trip to the zoo, where Alan had a great time climbing through an aquatic tunnel. Hopefully all the fresh air means he will fall asleep quickly tonight!


Mmm, it's nice to wake up to a popsicle!


How fun to crawl through a fish tank!

In the cast

Alan was off to the OR first thing this morning for his cast. Doc L was out to meet us in the waiting room by 8:45 and we went straight to the PACU to see him. He was rather upset, probably from the pain of having things adjusted to be cast, and also by all the equipment hooked up to him - O2 mask (another cute penguin mask), monitoring leads, blood pressure cuff, pulse/ox monitor, and of course IV. We shed them one by one and gave him some morphine for the pain while playing Madagascar to distract him and he eventually calmed down enough to drink some juice and ask for water.

Once he settled down, Alan seemed comfortable. The cast is fiberglass with a Gore Tex lining, so hopefully it won't be too heavy or get too stinky. Doc L came by to see us again in PACU after her next procedure and was glad to see Alan calm and comfortable. We will not see her again for six weeks when she will prepare to take the cast off - mostly likely a Wednesday clinic visit and then a trip to the OR on a Thursday morning to remove the cast while he's sleeping. Doc HJ will want to see us again as well, though she is fine waiting to coordinate the appointment at the clinic with our trip back to Houston to have the cast removed.

Doc L's fellow will check on us tomorrow morning and consult with Doc L by phone since it is a holiday for the hospital. They'll make the call tomorrow if we can be discharged. In the mean time, the rehab equipment company has located a car seat for us. The wrinkle now is that because it is a specialty car seat, it has to be installed by one of their technicians. We need to figure out when it can be done, and when we can get our other car into Houston, or if it can be reinstalled into our regular car in San Antonio by technicians from another company or a hospital.

Surgery Part Two

After a quiet evening last night, waking at 2 AM for about an hour, Alan was up at 6:30 AM. He was NPO because of the surgery, so his feeding tube was cut off at midnight. He was very cranky this morning because we couldn't give him the water he asked for. He was wheeled out of ICU at 7 AM, where a big crowd had gathered to send him off. We've been here in the ICU for two weeks, during which Alan has charmed a lot of people (seeing him sleep with his hands tucked behind his head gets a lot of laughs, and apparently a similar picture of him in his ClinicStation profile usually draws a crowd around the nursing station PC).

The surgery started at 7:30 AM and by 8:10 AM, Doc HJ has already come out to brief us on her part of the surgery. The stent was removed very easily - apparently sometimes the stent can adhere while it's healing but that was not the case with Alan. Since there were no problems, they didn't have to scope. Over the next few days, they will 'train' his bladder - clamping the foley catheter so his bladder will hold the urine for a while, releasing, then repeat. This will test and strengthen the sutures.

Things are starting off well, and we will update as the docs come out.

10:00 AM

Doc L has come out to briefs us on the closures of the incisions on Alan's leg. Things have been going so smoothly - apparently Doc HJ's part went so well that Doc L wasn't ready when she was done. They were able to close all the incisions without needing any skin grafts! We were a little bit worried about that - last night was had been talking with Aimee about skin grafts. They can come from the patient himself, though Doc L didn't like that option because Alan is so little and has thin skin because he's so young. The other options would be cadaver or animal grafts., but one of us donating the grafts would not be a possibility. We're glad that it wasn't necessary.

If there are no complications, the plan is to transfer from the ICU to the pediatric floor tomorrow. They will schedule a return to the OR to put on the spica cast next Thursday so his skin will have a whole week to heal. Then, a few days in the cast in-patient to be sure he's eating and comfortable and hopefully going home at the beginning of the new year.

Doc H was finishing the close on Alan as she left the OR, so we should be able to see Alan soon.

10:15 AM

Wow, that was fast! We just got word that Alan will be back in the ICU in five minutes!

10:30 AM

We made it back to the ICU in time to see Alan being wheeled back in, holding the PSP and watching Cars. It was so good to see him awake, calm and not intubated! He was intubated for the surgery, but is breathing on his own already. We were a little worried we would have to go through the whole extubation procedure again, which could delay our departure from ICU.

The Nurse Anesthetist was very happy with how Alan had handled everything. He told us that Alan was rather upset when he woke, but Alan has always been a cranky waker, so that did not concern us. He came out of the OR on fentanyl to calm him and morphine for the pain. He's still NPO for now, but we should be able to give him some ice water swabs to moisten his mouth in half an hour or so.

Alan being wheeled back to ICU watching Cars

After the marathon two weeks ago, this surgery was speedy and smooth. We're so happy to be back in the room with Alan, watching Madagascar and offering him ice water to dip his swab in!

Alan's Surgery

Alan is off to surgery. He was in good enough spirits to play a little while all the prep and consents were taking place. We will be getting updates every two hours.

9:27 am
We've just had an update from the urologist, Doc W. He spent two hours trying to put stents into Alan's ureters. The left one went in without any problem, but in a Catch-22 situation, the mass prevented him from getting one into the right side. The stents don't do anything to prevent the urete from being damaged but they do let the surgeons know when something happens so it can be fixed. Apparently, this is not an unusual situation, so while it's not ideal, Doc L will press ahead with the surgery. Doc W will continue to be on call if they need him back.

10:00 am
I panicked a bit when we were told there was another update so soon - was there something wrong? But this was a regular update from the nurse liason that she does every two hours. It seems Doc W came out to give us a specific update since he was leaving the OR to go to clinic.

Since it had only be a half hour since our last update, there wasn't much to report. They had started putting in Alan's lines - a central line to monitor his heart and facilitate rapid response, a peripheral IV to monitor his blood pressure. If things go smoothly, we won't hear again until noon.

12:15 pm
The nurse liason came to tell us things are progressing slowly, but because they're taking their time, not because there's anything wrong. Doc M, a vascular specialist is working with Doc L right now - yet another member of Team Alan.

2:30 pm
The nurse liason did not have many details to pass on. Doc L was working slow and steady to get at the tumor so we just have to keep waiting. We were joined by Pastor Fannin (Harold's pastor from his teenage years) and his wife Vivian for a while. It was so good to have their support and prayers.

4:15 pm
Not much more details from the liason nurse other than the fact that Doc M (the vascular specialist) and Doc L were still working together. Our friend Aimee, who was an OR nurse, has been sitting with us and been giving us expert explanations. Apparently tumors have veins and arteries of their own and with the scar tissue from his last surgery, they would want to move very slowly and carefully. Still no indication of how much longer they will be.

5:50 pm
Doc L came out to brief us on what was done and what's next. Overall, the operation in general went as expected with some relatively minor tweaks and changes to include:

1. The right ureter and an artery were removed because they were 'intimately involved' with the tumor (as in were basically going through the middle), however, both were being repaired by Doc HJ as we were speaking.


2. A vein was also 'intimately involved' into the tumor but when removed, no blood flow was observed, so it's been sealed. Basically, since the blood had been getting cut off at the tumor in the vein, the body found other ways to get the blood return back, so the vein wasn't being used anymore.


3. She had to remove the obturator nerve which controls some leg movement, but she said that Alan should be able to adapt to that pretty easily as he is so young.


4. All the major nerves and arteries appeared to be fine.


5. Removed the portions of the hip as expected and attached the femoral head (upper thigh bone top) to the remaining part of the hip as she had intended. She was pretty confident in getting 'negative margins' (as in all of the tumorous material) around the tumor but expressed caution in that she suspects that at least some post-surgery chemotherapy will be necessary.

7:45 pm
Doc C, the first anesthesiologist, came as he went off-shift to update us that Doc H-J was finishing up. He was very happy with how Alan was doing and he talked with us about Alan's pain management and his immediate post-operative care.

Very shortly after, Doc H-J came out to speak to us. Like the docs before she was happy with how Alan's surgery is going. She repaired Alan's ureter by stitching it over a stent and was happy that the bladder was not involved with the tumor at all. She just had to move the bladder off the tumor so Doc L could get to it - the bladder was resting against the tumor but there were clear tissue planes between them so the bladder repair we were anticipating was not necessary. She also went in to attach the stents and put in a drain. The stents are attached to his foley catheter so we are NOT to let anyone mess with his foley except her.

Doc H, the plastic surgeon, is working on the reconstruction and closing now.

8:55 pm
We just had a quick update from the OR. Doc H is proceeding with the reconstruction but otherwise there are no further details.

We just finished webcamming with Kevin, who was excited to see us for the first time in two days. We also said good night to our friend Aimee who has been with us since 10 this morning. It has been a real comfort to have her explain a lot of the details around the surgical procedures and practices and to take our mind off things with walks and conversation. Thank you so much Aimee!

12:10 am
It had been a while since our last update, so we called the ICU (the only number we had) to see if they had heard anything. We were also hoping to transfer our things from the room on the floor to the ICU so when Alan finally came out it would be a smooth and quick transition. Amanda, who will be his ICU nurse, came to speak with us. They had spoken with Doc H an hour ago, and they were still expecting to work for a couple more hours. They have a bed ready for Alan though, so we will move things there and come back to the surgery waiting room to wait for more news.

12:35 am
Doc H came out to see us and to our surprise so did Doc L. We thought she had gone home after seeing us at 5:50, but while Doc H was closing up they noticed his right leg was blue and hard.

What apparently happened was that clots had gone down the main artery, cutting off blood flow to the leg. Doc M and Doc L were called back to the operating room to help repair the situation. The clots were removed and blood flow restored, and the leg responded by turning pink and warm again. It wasn't under ischemia (lack of oxygen due to loss of blood flow) very long, at least no longer than a tourniquet would be used, and bled well once Doc L opened up the fascia (leg muscle comparments) to relive pressure that had built up. The openings (4 long incisions on the leg) also bled well, another sign that blood flow was restored. A strange thing to say that bleeding well is good!

Doc L will not have an idea of any long term damage for about 2 weeks and not with any certainty for quite a while, but she thinks that with the short time frame and Alan's youth we can be quite hopeful that he will recover.

Doc H brief was fairly short, basically reviewing the procedure he told us he was planning on. One small bit of good news it that he was able to repair Alan's abdominal wall without taking any muscle from the quadriceps. Our concern was that Alan is already leaning hard on those muscles due to the loss of his psoas muscle on that side.

Right now we're waiting outside the ICU while he's being settled and hooked up to monitors, so we'll say good night. Our use of electronics will be limited while Alan is in the ICU so the updates will be sporadic. Thank you for all the support and prayers. The comments here have been very encouraging through this long, long day.

Surgery today

We took Alan into the hospital bright and early today for the operation to excise the tumor. We originally had a time slot late in the morning, but Doc R's office called last week to see if we could come in earlier. You bet we could! The less time Alan is awake and NPO the happier everyone is, even if it means we're up in the wee hours of the morning to get to the Medical Center on time.

Doc K was our anesthesiologist today. There were a few new things today, since the operation and recovery were going to be more involved than anything we've done before. In addition to accessing his port, they also had a peripheral IV on his foot for backup as well as accessing an artery on his hand to monitor his blood pressure beat by beat during surgery and more easily get arterial blood if necessary. Since Doc R is going to make a rather large incision and have to work around where the tumor had moved things out of their normal position, Alan had an epidural. This will help Doc K control the pain with minimal medication since it will be delivered directly to the nerve branches instead of going through his whole body. Luckily all this was done along with inserting the breathing tube after they gave Alan a little Versed to relax and then gas to put him under.

Doc R reiterated that he would only be taking out what tumor he could easily reach without risking any of the organs, blood vessels or nerves (of which there are many in the area of Alan's tumor). He also told us that he had consulted with Doc J, a pediatric surgeon at MD Anderson, on Alan's case and she concurred with his plan for the operation. While the OR was blocked for 200 minutes for the surgery, Doc R anticipated it should take only an hour and a half. It ended up being slightly over two hours from the time they wheeled him away from us for the rest of the pre-op prep until we were taken to the PACU (Post Anesthetic Care Unit) where Alan was recovering.

Doc R was able to excise two pieces of the tumor, each about the diameter of a quarter. He was confident that it was a good representative sample. He told us that what he saw was all fiberous white scar tissue - a good sign! Of course, we will have to wait for the pathologists report.

Alan woke up shortly after we got to the PACU, but between the anesthesia and the epidural, he was rather loopy. Occasionally, he would stare at the hand with the pulse/ox monitor attached to his thumb. Oooh! Glowing red light... The nurses in the PACU took the IV out of his hand before we left for his room, but the peripheral IV and epidural will stay in until Doc K does his rounds tomorrow morning.

Since Alan was recovering from a surgical procedure and not going through chemotherapy, we went to a surgical ward instead of the HEM/ONC ward we were used to. In this ward, each room is named after a NASA mission - some Gemini and Apollo missions, but mostly Space Shuttle missions. Our room is named for STS-51-A, the second flight of the Space Shuttle Discovery. How fitting since Alan and his big brother are named for astronauts! Auntie Chelle came to visit this afternoon, so we went walking around the ward to see if there were any rooms named for missions flown by Alan or Kevin's namesakes. No such luck!

Alan spent most of the afternoon and evening quietly resting. Though he wasn't in pain thanks to the epidural, he also wasn't in the mood to move at all. Neither was he in a mood to nap! Later in the afternoon he started drinking lots of apple juice (surprising since he usually doesn't care for it). The kitchen had sent up a clear liquid diet tray for dinner, but our nurse checked with Doc R who said Alan could go for solids if he was willing to eat them. Since he liked the chicken broth that came on his dinner tray (another surprise!), we tried some chicken noodle soup. Wow, what a hit! He ate all the noodles and chicken and a good amount of the broth. Those tiny bits of chicken were the most solid protein he's eaten in months! He also ate cheese puffs and chocolate graham crackers. Hopefully, he will keep up this appetite.

It has been a long road to get to this point, a rather significant milestone we've been working towards since the day we were told that Alan had cancer. There will be more ahead, though we won't know what for sure for a while yet. But on this occasion, we want to thank everyone who has helped, encouraged, prayed and rooted for us so far. Every single comment on the blog or Facebook, every e-mail, text message and phone call letting us know you are thinking of us and praying for Alan have been such a source of strength. Thank you!


Alan waiting for surgery


Pandas are always a good distraction


Alan in the PACU

New Port

After three days home from our family trip, and three weeks port-free, we went into the Ambulatory Surgical Center this morning for Alan's new port. It was an early morning, but the surgery went smoothly and we were home by noon.

As the nurses said he might be, Alan was rather irritable from the anesthesia this afternoon and evening, but he was eating plenty of puffs, apple bits and even some liverwurst. Still no luck with the milk - we have even tried goat's milk hoping that the different taste would appeal to him. We see the doc for the first time in almost a month tomorrow. Alan is maintaining his weight right now, so maybe he'll hold off on a new feeding tube until the chemo takes away his appetite again.

Bye bye port

07/28 1030
ANC 8600

Doc P is back after a month off visiting with family. He showed up at the hospital bright and early, but not as early as the X-ray tech who came to our room to take a chest x-ray of Alan. Last night both of Alan's ports had become clogged, and the TPA didn't help. They finally left Alan alone to sleep, and in the morning, Doc P decided to take his port out. He thinks that bacteria is caught in the port with with the clotted blood. Some of it was probably dislodged on Sunday when they flushed the port in preparation for chemotherapy, leading to our shivering incident on Sunday afternoon. Best to be safe and take it out. We'll go on our family trip port-free, and get a new one before the last course of chemotherapy.

So, this morning they took the two needles out of his port and put an IV line into his left hand. Unfortunately, that means we're back to the wrapped board on his hand, but it should only be for another day. Doc R, the surgeon who put the port in and biopsied his tumor back in April and who will eventually remove the tumor, took the port out this afternoon. He took a culture around the site of the port and from the catheter of the port, but reported that the site seemed to be healthy. We talked about a future date for the new port and about the removal of the tumor. Alan was only in the OR for half an hour, and Doc R said the procedure itself would only take ten minutes. Alan came through just fine, having enough energy to hide under his blanket from the bright light in the recovery room. He spent the rest of the day quietly in his crib, not napping, but not very active either. Hopefully it will be an uneventful night for once and he (and Mommy!) can get some sleep.

Hands free

After a couple of hours delay, Alan finally went into surgery for a bone marrow biopsy, medical port installation, and a biopsy for a larger section of the tumour for more extensive testing. The surgeon explained that the first biopsy, done through a needle, could only collect a small amount of cells, and ran the risk of collecting "dead" tumour cells. This morning he collected several cubic centimeters of the tumour, giving the pathologists much more to work with.

When we saw him in recovery around 1 PM, he was sleeping rather noisily on his side, with a mask blowing oxygen. He was beat.



We returned to his room around 2:15 and after a nice heavy nap, Alan woke up to drink some juice and water. Now he has the port, they were able to take out the IV and splint on his left hand. Free at last!

Waiting

We're waiting to get into Alan's surgery. Not only will we be putting in the medical port and doing a bone marrow biopsy, now we are also going to do a more extensive biopsy of the tumour. One of the pathologists thought that it might not be the rhabdomyosarcoma and wanted a larger sample to test.

It doesn't change the form of treatment, but will affect the mix of drugs they use if it is a different type of tumour. We won't know whether Alan's chances or better, worse or the same until we get the results. So we'll be waiting for those results hopefully today.

One thing that we aren't waiting for (and this might be TMI for some people, so continue reading at your own peril) is for Alan to have a bowel movement. He hadn't had one since Monday morning at home, and we were starting to get a little concerned. A little milk of mag in the wee hours of the morning and we had not one, but two poopy diapers later on. It's amazing how pleased parents of a baby, especially a sick one, can be by something so simple.

In recovery

Alan went in for his MRI, another CAT scan and biopsy this morning. Because he would have to be still for 35-40 minutes for the MRI, he was put under general anesthesia for all the tests. We were able to see him around 11.

Alan was understandably cranky - after all, he hadn't had anything to eat or drink since before midnight. But when he relaxed enough to lie back for a while, he became mesmerized by the beep and trace of his monitor. That's our boy, he just loves the beeping gadgets!