Thankful

This has been a tough year for us, and the last couple of weeks have found us in limbo. We got a copy of the radiologist's report last week - from what little we could understand of the jargon, it sounds like the PET-CT didn't turn up anything alarming. Neither Doc P nor Doc W have called us in for a consultation based on the results, which we've taken as a good sign. In fact, we will not be going back to see Doc P until next Friday. Doc P still has not heard back from Doc L in Houston (which is not surprising with the holiday this week) so we're still waiting.

Rather than dwell, we are trying to remember all the things we are thankful for this Thanksgiving. We are grateful for all our friends, both old and new. MOMS Club, playgroup, the squadron, Air Force friends, Kevin's school, neighbours and even our local community have all stepped up to help us through the last seven months. We've made new friends since Alan's diagnosis - Liam, Gavin, Sydney and Collin's families - fellow travellers with whom we could share this experience.

We are thankful for Alan's strength and energy. Seven months ago the doctors were worried he might lose his leg, and now he's running around. Uncle Peter and Po Po are visiting this week, and Uncle Peter is being run ragged chasing after his namesake.

We are thankful for the joy our boys have brought into our lives. Kevin and Alan love playing together and listening to them set each other laughing. Now that Alan no longer has his feeding tube, we have started rooming him and Kevin together. It's so cute to hear them giggling - when we hear Alan start cackling, we know it's time to check the monitor, because it usually means Kevin is climbing over the side of the crib to join him.

We are thankful for family. We are lucky that both grandmothers have been able to visit this year. The aunties and uncles have been standing by to help and the cousins have been wonderful with the boys.

While we pray that Alan's road to recovery is smooth and short, we are grateful for all these blessings. We hope everyone has had a wonderful Thanksgiving Day and that we'll have good news to share soon.

We'll leave you with this video of Alan meeting his newest panda, Tackley -

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.

Office visit 11/16

11/16 15:55
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It was nice to have a week off from office visits, needle pokes and blood tests. We tried to have fun with the boys and not let all the scary possibilities get us down. We had a later appointment than usual today so Doc P would have the time to sit down and talk with us.

It was reassuring and we felt a lot better at the end of it. We would prefer Doc P and Doc R's surgery, but we were afraid we favored it because it was what we wanted not what Alan needed. Doc P assured us that he has had no problem recommending radical surgery, even amputation, when it is needed, but does not see that need in Alan's case. Even if Alan's sarcoma is the variant the Doc H-H thinks it is, Doc P believes that the characteristics of Infantile Fibrosarcoma are present enough that he would not recommend a change in the treatment plan.

We asked him about Doc W's objections to the surgery Doc R was going to do - his description was that it would merely be smearing the tumor around. Doc P that can be the case in Ewings Sarcoma, a much more dangerous tumor. It would not be a problem for Alan, so the hemipelvectomy is off the table, but still up on a shelf, waaaaaaay back in the corner (could we stretch that analogy any further?).

Obviously, the surgery is postponed. Doc R agrees we should get our second opinion and results from the PET-CT first. Doc L is out of the office right now, but has Alan's scans. Doc P will give her a call Wednesday when she gets back and he told us to be sure not to leave the radiology office without getting the PET-CT results on disc. Depending on what Doc L says we'll go back to the office at the end of the week or next Monday.

So, more waiting, but with a lot less anxiety.

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.

Office visit 11/9

11/09 12:33
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Alan's counts are good, so we don't need a transfusion and we don't need to come back until next Monday. We talked to Doc P some more about our options. He's working on getting us a second opinion, but in the mean time, we need to start thinking about decisions. We picked up a CD with a copy of Alan's scans and now just have to wait.

Roller coaster

We had another very sobering meeting with Doc W. He had a lot of really specific issues to discuss with us which really up the ante. He is concerned with the way Alan's tumor is behaving. When a soft tissue tumor comes up against bone, it usually smushes itself against the surface of the bone. This mass goes in and through the bone, not just against the surface. We also got a reality check on the regrowing bone - bone wants to grow, so while it's good news that we've seen some bone coming back, it's not the evidence that bone is no longer at risk from tumor. We asked about Alan's limp and it is Doc W's opinion that it is due to tumor involvement in the Psoas muscle, rather than problems with the hip bone.

Doc W is also concerned about how the tumor may be infiltrating into his spinal column, around the hip socket and the nerve roots. He is more skilled at reading the MRI images than the other docs and still sees a lot of involvement. If the tumor continues to spread through those areas, the loss of the nerve roots would affect bowel and bladder function.

We also have to worry if the tumor has compromised the growth plate on his hip. If it has, Alan may be in for a series of orthopedic surgeries until he is fully grown - if the left hip grows normally but the right hip is arrested at the one-year-old size and both legs grow normally

Daddy asked if it was possible that this involvement was there from the very beginning, and is only now becoming noticeable because the bulky part of the tumor has shrunk away, as opposed to it being new growth. Doc W allowed that this was a possibility.

We had been encouraged about how much the tumor had shrunk since our diagnosis in April, but Doc W told us that the shrinking does not necessarily mean that what is left is dead tissue. Doc W wants to do a PET-CT which would show metabolic activity, telling us if and where there is live tumor. Then Doc R can sample it with either a core needle or incisional biopsy. He definitely thinks we should get our second opinion after the PET-CT but before surgery.

We called Doc A to set up the second opinion at MD Anderson, but the doctor he wanted to speak to won't be in until Monday. We are still waiting on arrangements for the PET-CT since most facilities that have it do the scan on an outpatient basis. Finding a place that can do it and handle anesthesia for a two year old is proving difficult.

Logistical difficulties aside, this has been extremely emotional for us. The discussions with Doc W have been the the first ones where we've really gotten into the anatomical implications of Alan's tumor. Not surprising giving Doc W's specialty. The critical and complicating factor in this is the location of the tumor. Similar tumors in other children are usually found on the extremities and can be more easily removed and life goes on. The location of Alan's tumor, nestled against joints, nerves and internal organs, makes his case so much more critical. One of the things we've been grateful for is that Alan is too young to remember any of this and it was our hope that when he was older, while he would know he had cancer as a baby, he wouldn't be affected too much by all of this. Now we know there is the possibility of some long-term, possibly life-long disabilities on the table.

We feel like we've been spending the last six months on autopilot, going to chemo like we were punching a ticket hoping to turn it in for surgery to take the tumor out. All these revelations have left us feeling rather beat up and out of control. There's nothing we can do this weekend except wait, so we're going to try and forget our troubles and celebrate Alan's birthday.

Doc W admits that he is a pessimist, and it's probably best that he share the worst case scenarios with us so we can prepare. We'll take any good news as a gift and a blessing. Please pray for the best possible outcome for Alan and that he can grow up with as normal a life as possible.

Office visit 11/4 and visit with the surgeon

11/4 11:25
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After getting up at the crack of dawn to get back to Radiology when they opened, we got Alan set up with Doc B. Since Alan's port wasn't accessed we went for anesthesia instead of sedation. Since the CAT scan could be done very quickly, they could do this without intubating him so this was the least invasive method.

This was the first time Daddy had seen Alan going under with gas, so he was surprised how quickly Alan went from kicking and crying to sleeping. By the time we made our way up to the 2nd floor waiting room by the PACU and made a trip to the rest room, he was already done and arriving in Recovery. Since it was a very small dose of gas he was soon up and alert. Like yesterday, he was not interested in water or juice. We waited a little to be sure he was recovered from the gas and then offered him chocolate milk and a cereal bar. Since he wasn't NPO for that long, he wasn't quite as piggy this time.

Since we had a little time before our appointment with Doc R, we dropped by Starbucks for some breakfast for Mommy and Daddy. It was a beautiful morning so we enjoyed the sunshine and fresh air on the patio. We offered Alan some of the fried egg, muffin and turkey bacon and he was gobbling it up! He hasn't eaten a solid form of protein in weeks, so this was very encouraging.

We headed to Doc R's office where he showed us the MRI and CAT scan images. There is continuing shrinkage (3.3 x 2.2 cm from 3.7 x 2.3 cm in October) and it looks like the tumor is no longer in his spinal column. Doc R told us about what he wanted to accomplish with Alan's surgery - he plans to remove as much of the soft tissue tumor as possible without cutting into anything else. He was very specific that this was not a debulking procedure, which confused us since that seemed like what he was describing. Apparently, the specific medical term debulking may involve removing tissues connected to the tumor in order to remove as much of it as possible, whereas in Alan's case the goal is to retrieve as much of the tumor as possible so we can send a representative sample to the pathologists.

The doctors who will be looking at the tumor are the pathologist at our hospital, Doc H at Texas Children's Hopsital in Houston (who examined Alan's slides back in April when we were determining exacatly what he had), and Doc H-H (Doc W's pathologist who had examined Alan's slides in October). We are quite interested to hear what Doc H-H has to say, since she seems to have a slightly different opinion of how agressive this cancer is than the other pathologists.

In any case, we will be seing Doc W, the orthopedic surgeon, on Friday to go over the scans and hear his opinion. We're not ready to move ahead with the hemipelvectomy yet, but it's good to hear what everyone has to say.

After we left Doc R, Daddy had to head off to work, and Mommy and Alan went to see Doc A at the office and tell him the date we had set for surgery - in two weeks on November 17. Good counts so far, but we will probably have to have one more transfusion before the surgery because Alan's HGB level is under 10. Otherwise, Doc A was very happy with how Alan looked and we won't be back here until Monday!

Office visit 11/3 and scans

11/03 10:01
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We got to the office early before the scans so Alan could get counts and some IV fluids and nutrition. It was an adventure keeping up with him while he tried to run around. Auntie N was in town visiting and she took a turn wrangling him up and down the office hallway.

We took off to the hospital with the IV bag and proceeded to wait. Alan's appointment was at 1:30 but because of an emergency case, he wasn't wheeled out of Pedi Prep & Hold until 3:00. Needless to say, he was not a happy baby. Besides being tired, he was hungry since we had to keep him NPO since midnight the night before. The IV fluids kept him hydrated and nutritionally supported, but that's not the same thing as drinking chocolate milk or eating a cereal bar. Our anesthesiologist this time was Doc J, who had taken care of Alan last time.

During previous scans Alan had woken up and had to be re-sedated, so they were keeping a close eye on him so things wouldn't drag on. The nurse that took him to the MRI chamber said they caught him before he fully woke up this time (though he still moved enough to fuzz some of the MRI images a bit) and said they now knew to keep an eye on his feet. Apparently, his feet are the first thing to move as he starts to wake up.

When he woke up, we waited a little before offering him his favourite chocolate milk since you're supposed to start with clear liquids after sedation. He pushed away the juice and water though, and when we finally gave him a cup of chocolate milk, he guzzled almost the whole thing all at once, then he gobbled down a cereal bar. Since he seemed fine, we were soon on our way home.

Unfortunately, as we were driving home, we got a call from the nurse. She had been so concerned about getting Alan through the MRI that she had forgotten to take him to the CAT scan! So we made arrangements to head back first thing in the morning (Pediatric Radiology opened at 7 am) so that Doc C, the radiologist, could read the scan at 8 am and have the report ready for the surgeon Doc R when we saw him at 9:30.

What a long day! The next time the docs even hint that Alan needs another scan, I'm going to have them book it right away so we can get an appointment first thing in the morning. Dealing with an afternoon appointment is just too exhuasting!