Long Day at LPCH

On Saturday the MRI department at Stanford called us to tell us there was an opening on Tuesday for an MRI and we could reschedule our MRI from the 19th to 11th. I jumped at the chance because Beckett wasn't sick and had been doing really well with his congestion since we got the new nebulizer medicine. On Monday the nurse called me and said that they would be able to access Beckett's port for the general anestheisa after he was already asleep from the gas. That morning I told Beckett that we would not need to use the EMLA cream (numbs his skin prior to getting poked) that we usually use when he gets his port accessed because he HATES it and everytime I put him in the car seat he says, "No cream today." So in the morning, I said, "That's right no cream. Just a little medicine."

When we get to the hospital, and I saw the jam-packed waiting room I new we were in for a long wait. Around 10:30 which was when we were supposed to go in for our scan, the nurse called us in for the physical exam. She, of course, noticed his stuffy nose which I told her was chronic and he has had several scans before in this condition and that if we waited till he was completely clear it wouldn't happen.

Anyway, this was the first time that he has had general anesthesia through his port and he usally gets it accessed in the oncology clinic where they do it all the time. So the nurse tells me that it's better to access port in order to administer the general anesthesia and skip the gas step altogether and so he does need to get poked while awake. The nurse said she didn't understand why the other nurse had told me otherwise.

So then another nurse came in. I should have realized when she asked ME what size needle to use she might not be as experienced as I would want someone to be. So then she tells me Beckett will need to lie on the bed perfectly still for her to do it. Um, yeah right. He's 2, for Pete's sake. I told her that in clinic I usually hold him on my lap and she said, "Well as long as he doesn't kick me, I just had surgery." Beckett was really upset by this point and saying, "No, please, no please, no hurt." I said, "Should I take him down to clinic to get accessed?" and she said, "No, I know what I am doing,'" and finally stuck in the needle. Then she tried to use the port and nothing happened. This means that the needle was in the wrong place. The nurse said, "Have you ever used this port before?" Um, yeah. Like 14 times. She said, "Well, if they didn't flush it right the last time, then it doesn't work." So basically she was blaming day hospital, who do nothing but administer chemo and flush ports all day long because she goofed.

Thankfully the other nurse came and said, "Let's give him a break. Since you have a long wait, I'll do it in a little while and give him a little topical medicine so he doesn't feel it."

So finally around 12:45 she came back and we finally got the port placed but it was certainly no picnic. After waiting around another 30 minutes for the anesthesiologist, we finally went down to MRI. They let me stay until Beckett went to sleep and then I went to get food. (Did I mentioned that Beckett had last eaten at 7:30 pm the evening before?)

I went back up to the waiting room and after a few minutes I saw the doctor walk by with Beckett in the bed. She called me over and said that they had been unable to do the scan because his oxygen saturations had gone down too far and he needed a breathing treatment and oxygen administered. He was okay, but they couldn't do the scan because administering the full general anesthesia caused his airway to be disrupted.

I waited for awhile in in the recovery room and Beckett woke up.(He actually could have slept a lot longer as it was his regular nap time, but we woke him up.) When he woke up he promptly gobble two purple popsicles and was his usual cheerful self. We were cleared to leave around 4:15 pm (original appointment time: 9:00 am check in, 10:30 scan).

Afterwards I took Beckett to (yikes!) McDonalds and he ate a WHOLE chicken sandwhich and a carton of milk and then when we got home he ate strawberries and yogurt.

So all's well that ends well and now we are just going to wait for a new MRI time and discuss how we are going to deal with the respiratory issues during it.

And in other news...

Beckett is going to be a big brother. We are really excited to be 24 weeks pregnant with number 2. We are taking a lot of precautions this time around as Beckett was born 11 weeks early (at 29 weeks) due to HELLP Syndrome . We were lucky and he a had a relatively uneventful NICU stay (7 weeks) and aside from the optic glioma is doing quite well for a former 2 pounder.

The info so far:
We found out a few weeks ago that our new addition will be a boy.
He's on track on growth scans (as of today 1 lb 6 oz) .
My health is pretty good with only minor increase in blood pressure.
We are being watched and monitored very closely with monthly growth scans and other tests for now.
I am taking daily injections of Lovenox and also daily baby aspirin to prevent problems from occuring.
I am WAY bigger than I was at this time with Beckett. In fact, I am bigger than when I delivered him, which we are taking as a good sign.
This past week we had an ultrasound and got an awesome picture. We also found out that so far things look good but in the words of Doctor Taslimi, "We're not letting our guards down."



This is a profile shot in case you couldn't tell! (It takes awhile!)

Cousins

Beckett and his cousin Milly get along so well! It was great to have everyone out here and see the kids together again. I am glad that they get to see each other as they grow up and they can be friends, even influence each other. Today, Beckett said, "I climb Milly." (He wants to climb like Milly.) I think she might also have a positive effect on potty training, but the jury is still out. Beckett also loves to look at pictures online of Milly and Jed and watch their videos on Youtube. Each of Milly's videos have about 80 views and I am sure that most of those are Beckett.


The picture above is from the newly remodeled playground in Ben Lomond, which has awesome play structures, including a giant rope web to climb in, a bunch of different slides, a super cool padded surface, swings, one of those cool phone things, etc. Of course, as you notice in this picture, the kids are playing with grass. What could be more fun?

They also had fun at the grocery store. (Also newly remodeled.) I can't wait until they're teenagers and they actually drive. (NOT!!)










We still haven't heard about the last giardi test, but we're willing to bet Beckett will need another round of antibiotics. His sinus infection does seem to be getting better though, partly from being out of daycare and partly from more treatments.

Great Grandma

Since we last posted it's been pretty eventful here. My grandmother (Beckett's great grandmother) had been really sick. She was in and out of the hospital multiple times. My sister was really worried so she flew in from England with Milly and Jed (Beckett's cousins) for Thanksgiving. We brought all the kids to see her on Saturday afternoon. She woke up and talked to them all and it was great. Unfortunately, she passed away on Sunday night. She was 90 years old.

Beckett and my sister's kids are too young to remember her, especially Jed who is only 7 months old, but Beckett loved to go visit her in her apartment, because of the elevator and the fact that she always let him play with her phone a much as he wanted. She even let him keep holding it after the "If you'd like to make a call please hang up..." lady came on.

I only have a couple pictures of Beckett and my grandma together, because most of the time when they were together, she mostly took pictures of him. But here is a recent one as well as one from when Beckett was a baby.

Feet better... tummy worse

Beckett's feet and walking got much better over the weekend. However on Saturday he started having respiratory problems and required several breathing treatments. After a couple days of taking it easy he feels much better. Today, on Tuesday, he stayed home with John and went to the doctor who gave us a different nebulizer medicine and also a daily nasal medicine which should help with the chronic sinusitis.

We also got a call from the nurse at Packard and she confirmed that Beckett has giardia, which is a somewhat nasty parasitic illness. Because his immune system has been depressed by the chemotherapy, the treatment is not so straightforward. Trish, from neuro-oncology at Lucile Packard, had to talk to an infectious diseases team. They finally decided to give him an antibiotic with a name as long as my arm, something that the local pharmacy does not stock (it's on order). Otherwise, he isn't showing any symptoms right now apart from some bloating and diarrhea.

Owie feet

(Note: Scroll to end to read happy ending first.) A few days ago we noticed that Beckett was having trouble walking and he was stumbling a lot. At day care that day the teacher told me that he seems a little slower than usual lately and she was a little worried. I had noticed that he seemed kind of tired.

We called oncology and they said that the funny walking was probably the result of the vincristine and that in general reducing the vincristine dose doesn't help, just discontinuing it, so they don't really do anything about it unless the kids can't walk at all.

That night (Thursday) when I picked him up from day care he was standing by the teacher and when I went to hold his hand so we could walk to the car, he fell. I carried him and that night he couldn't walk anywhere and just wanted us to carry him. Everytime his foot touched the ground he would say "Owie, foot" or "Owie, toe".

That night, around three I heard him open his door to his room and I figured he was trying to come get in our bed which he does sometimes. I was happy because I thought he was walking on his own, but when I looked he was crawling. It was so sad. Poor little guy.

The next morning we took him to Grandma and Grandad's house because I didn't want to take him to daycare and we called oncology again. I got the voicemail. When I finally got to talk with someone, they said, "How soon can you get here?" When I told them it would take me an hour, they said, "Not any sooner?" I raced to Scotts Valley where I was meeting my mom and we both then raced with Beckett up to Lucille Packard Children's Hospital.

The oncology nurse came to see us right away. She watched Beckett walk and confirmed that it was definitely from the vincristine. She said that the walking issues are from neuropathy which is like pins and needles (like when your foot falls asleep) but in little kids it can actually feel like pain. She said there is medicine for it, but she probably wouldn't recommend it at this point as she wants to keep as many chemicals as possible out of Beckett's system. She also said they would probably not discontinue his vincristine, but see how he is after his first treatment back from "break" which will be on the 21st of November. She said the reson why they had wanted us to race up there was that she was worried that something else, like pressure in the brain, had been causing his difficulty walking, but watching him she was reassured. She said she had even arranged for him to have an emergency scan if we needed to but seeing him, she felt much better. (So then I felt better, too!)

The next step of the regimen, which I explained badly in the last post will include 3 weeks of carbo/vincristine, one week of carbo only, and one week off. The cycle will be repeated, I think, 10 times.

We also found put that they moved up his MRI from the 26th to the 14th so even though he has two weeks off from chemo he STILL will have gone to Stanford every week since the end of August. By the time of his next break that wil be four months straight.

Today, Saturday, Beckett is walking much better. He still has "slappy feet" causes his ankles are really tight, but he is walking where he wants to go and seems his usual happy (snotty) self.

Induction over!

We just got back from our tenth chemo treatment. Now we don't have to go back until the 21st of November. We may not even have to go up for an MRI if it can't be rescheduled (it's currently set for 11/26.

Beckett did great today as usual. Serendipity struck as we turned on the TV at exactly 1 pm and found one of Beckett's current favorite episodes of Backyardigans. He calls it "Horses" but it's actually called "Riding the Range". He was a little annoyed about commercials and the fact that you can't just "watch again" on the TV like you can on DVD. Ahhh, technology.

After we left the hospital we went to Target with Auntie Sarah. Beckett had a great time and when we dropped her off he kept saying, "More Sarah, More Sarah."

Someone recently asked me about the size of Beckett's tumor. Today Trish told me that it was about two centimeters in diameter, but that doesn't count that part that extends down the optic nerve, which can't really be measured. She explained that it's like the optic nerves are thickened and that that is what can impact vision. Beckett's tumor apparently was 1 cm in January's MRI and 2 cm in July with more thickening of the optic nerves which amounted, I guess, to a significant increase. Since that time we have not seen an increase and hopefully the next MRI will also show stability.

Anyway, I am glad that we got through induction. Our protocol for the next 10 months or so is four weeks on (three weeks with carboplatin and vincristine and one week with just carboplatin). We'll have MRIs after every two series I think (about every ten weeks).

I hope we'll have some good potty training news to write about in the meantime.

Halloween

Beckett had a Halloween party at school today. Being the lazy (super busy) mom that I am, I donated the juice boxes. I think there must have been quite a few like me because Trader Joe's was wiped clean out of juice boxes except for the sugar filled white grape and (gasp!) lemonade. Oh well. We tried to make it back home in time for trick or treating, but we rolled through at 6:10 and it ended at 7 and we still needed to eat dinner. Secretly, I was kind of glad because it looked like the whole town was out trick or treating and was a little crazy. Beckett didn't seem to mind which I am sure will not be the case next year.

Here's a picture of Beckett in his costume. (We kind of cheated because this picture is actually from last weekend when we tried it on.) That face he is making is a growl.




Tomorrow is his 10th treatment and the final one in the "Induction phase". He will get a two week break from treatment during which time he will get an MRI to let us know how the treatment has been working. We are hoping for no growth or even for a reduction in the size of the tumor.

Can't Touch This

This week John's mom has been visiting us from New Jersey. It's been great having her here and Beckett adores Grandma Pat. She "got to" take Beckett to treatment on Thursday and has been helping us a lot with babysitting (we actually went on a DATE), cooking and all kinds of stuff. Today we had a birthday part for John (40th!) at the park. We had great fun seeing everyone and Beckett ran around the park with Ruby and Charlie (the twins of a friend of mine). There were two major hits of the party: My friend Elaine, gave John one of those audio birthday cards that plays "U can't touch this" when it opens up, and Alex, his brother, gave him a card that plays monkey noises when you open it. Ever since we got home, Beckett has been playing with MC Hammer and doing a little dance as he plays it. When I tried to hide it before bed, Beckett forlornly asked for "Purple Card" for 5 minutes before we figured out what he was asking for.

Now he's sleeping with both cards cuddled up next to him and I am waiting to be awoken to MC Hammer at 2 am. (If that happens. I am calling Elaine.)

Lucky

We had our eighth chemo treatment today. I was feeling sorry for myself because work has been stressful, etc. Every time I go to Lucile Packard Children's Hospital its a good wake-up call though. Beckett was in the Day Hospital, and the girl next to him was on week 90 of chemotherapy. Also we met another boy who had gone through TWO YEARS of various treatments. And he was only three. I heard another lady asking the social worker for a letter for her boss because he didn't believe her that she needed to spend the day at the hospital with her daughter getting chemotherapy.

We are so lucky! We know Beckett is going to be fine. We have health insurance that makes it so that we don't worry about how we are going to pay for all this. We have jobs that allow us to take time off to care for Beckett and supportive friends, family and colleagues. It's still hard and exhausting, but we could have it so much worse.

Beckett did great today. I have given up on having him sleep through treatments so the tough job is entertaining him for two hours while he gets his fluids, zofran, vincristine, carboplatin, flush and heplock. The worst part, as always, is when the nurse "deaccesses" his port and takes off the tape holding it down. When we left, he fell asleep before we got on the freeway, after only demanding the Signing Time CD once.

15 minutes...

...of fame.

http://www.santacruzsentinel.com/archive/2007/October/16/local/stories/03local.htm

Look at the picture. (You can read the article, too. It's about a sales tax extension for the library in Santa Cruz.)

Six down.....

Beckett had another fairly uneventful week at chemotherapy. It was our second week of just getting vincristine so he didn't have such a long day. In fact we rescheduled it so that I could take him after school and save my sick days for the upcoming months.

Beckett is starting to realize where he is going so he starts to say "Owie" when we go in to have his port accessed. He's a trooper though and only cries for a second.

This week we start back up on both the chemo drugs so we are back to long appointments. John is taking him this week and I'll take him the following week. Luckily, Grandma Pat is coming for a visit and she is going to go with us. Having another person there will make it much easier. So we only have four weeks to go until our two week break. We start up again right before Thanksgiving so our chemo that week will be on Wednesday instead of Thursday.

Beckett is also having an evaluation for physical therapy Monday, as the result of leftover preemie issues. He's just a bit behind on some stuff like jumping and running. I think it might be a bit genetic because my mom tells stories of me hiding behind doors trying to jump when I was his age and John is not the world's most coordinated person.

Otherwise Beckett is doing great. He's talking up a storm, chasing the poor, patient cat and calling his cousin in England (who owes us call, by the way).

Sick

Beckett has an ear infection in both ears and a sinus infection. I'm not sure how much, if anything, this has to do with the chemo suppressing his immune system. Yesterday he was sent home from daycare with a fever of 102, and today he barely had a fever at all. The pediatrician prescribed yet another round of antibiotics, about the third that he has had. The cold or fever isn't anything too much of a concern right now as his blood counts are still very high, but we worry about him being sick as the treatment progresses.

Yet Beckett continues to be his normal, cheerful self, even if his nose is running like Niagara Falls. Well, he has his moments of grumpiness, but they seem typical for a two-year-old. The chemo appointments themselves have been no big deal. This week and next week he is getting only the Vincristine, which means the appointments will be fast and relatively painless.

Buzzed!

We had a pretty good week. John took Beckett to his third treatment this week. It went well and this time he slept after watching some of Cars. It was another long day though as his labs needed to be redrawn. In fact, his chemo started about 1.5 hours late. Beckett has been doing so well with all this. It doesn't seem to be getting him down at all.

On Saturday we were visiting Grandma (Barbara). I told her that we were going to get Beckett a haircut to get the hair out of his eyes and she offered to do it. Skeptically remembering many "mom haircuts" I had received as a child, I figured we had nothing to lose. About three minutes later we were on our way to Supercuts where Beckett had his hair "evened out" which amounted to getting buzzed. We weren't going to buzz his hair until we found out if his hair was going to fall out, but... he actually looks pretty cute. I don't have a picture of the buzz cut because I can't find the camera at the moment. I do however have a picture of the pre-buzz cut that Grandad took.

Home Sick

Beckett woke up this morning coughing and congested, so I called a sub. We called the nurse practitioner at Stanford who suggested we take him to the pediatrician. I was a little hesitatant as his regular pediatrician is on maternity leave (Dr. Walker who we LOVE), but we saw a great doctor. She thought he had sinusitis so he got another round of antibiotics so we'll see if he is able to kick it. Of course, chemo compromises his immune system so it might take awhile.

He took a three hour nap when we got home and just woke up, smiling and happy. (Since Beckett had woken up ready to go at 4:15 this morning, I decided to avoid laundry and take one too.)

Then this:
He wanted me to turn on the lights on his toy truck (Hess truck--thanks grandpa Oscar!). I told him the light was broken (no batteries--which I didn't tell him). He looked at me and said "ba-ry" Now, how did he know that?

2nd Treatment

Cassie took Beckett to his second chemotherapy appointment today. Beckett did fine this time too, and apparently the only big trick is getting him to hold still for two and a half hours. He watched 10 minutes of every movie that they had on the TV system at the hospital, called almost everyone that he knows on the phone, read, blew his nose, and wiggled.

Trish Murphy, the Nurse Practitioner who works with Dr. Fisher (and Trish is amazing, by the way) told us that Beckett has an ear infection, but that he will just have to work through it, although it'll take a while because the chemo will sap his immune system. His blood counts today were good and there were no other problems. Beckett didn't even cry when they accessed his port.

We also heard from Trish that Beckett's MRI showed no change from early July. This is very good news, but not so good that we can stop the treatment. The tumor board at the hospital will review the MRI and we may learn more.

Beckett continues to be happy and still seems unfazed by the treatment.

IPod

Beckett has his own playlist on Itunes. His favorite song is "Song 2" by Blur. He even repeats the lyrics if you sing the song to him.
Song: "I got my head checked."
Beckett: "Checked"

He loves all kinds of music though and whenever he hears music from a car stereo he shouts, "Dance" and bounces up and down. He knows guitars, pianos, and drums and asks for music whenever we get in the car.

The other day, I was packing up my gym bag and he looked at me and said, "IPod." Now he likes to listen to the IPod. Luckily, in this picture, you can't see that he isn't wearing any pants.

Recovering at home

Yesterday Beckett had an MRI, and since they have to use general anaesthesia with kids his age, it was his second day in a row getting knocked out at the hospital. Apparently he had some problems with the anaesthesia because he continues to be congested, but a chest x-ray showed no problems and he was allowed to come home.

So far this morning he has been cheerful and alert, but somewhat tired as well: right now he is snoozing peacefully in our bed. It's hard to say if the chemotherapy tired him out at all since so much else was going on, but as far as I can tell, the chemo didn't slow him down at all. I've got to admit that I was envisioning him being so worn out by the chemo that he would just lie in bed all day and not be able to move, but that hasn't been the case at all. He is happy, playing, bouncing around: his usual self.

I imagine that the chemo will get harder as the treatments continue, but right now it's reassuring that the treatments might not hit him too hard, at least not all of the time. He has occasionally been saying "owie" and pointing to the scar from his operation, but he hasn't been complaining about it very much, so I don't think it hurts much or at all. The port just looks like a funny bump on his chest; there are no leads dangling out of it unless they access the port.

Now he is on antibiotics and his regular breathing treatments for the infection. He has been taking some Zofran, which is an anti-nausea medication, but we haven't noticed any nausea or any change in his eating habits. He is also taking a laxative because one of the medicines in the chemotherapy can cause constipation, but so far he's been pooping normally, too. Or is that too much information?

Now we just have to be a bit careful about washing our hands more, using antibacterial soap, and generally trying to make sure he doesn't get worse or get sick again.

Home from the Hospital

It's after 11:30 PM, and we just got home a little while ago. Today was mostly tiring due to having to wait around all day, but everything went just fine. Beckett had his port placement operation at about 4:00 (we had been at the hospital since 9:00), and we got to the day hospital around 6:30 for the chemo. Beckett had a slight fever but everything went ahead anyway.

Beckett was in some discomfort when he woke up after the surgery, but after some morphine he calmed down and was fine. When we went to the day hospital, he was able to watch TV and movies while he had the chemotherapy. The chemo took about 3 hours, but it was almost 10 by the time that we left the hospital.

While it was an extremely long day, the hospital staff went out of their way to make sure that it could all get done today, since they knew that we had already had to reschedule a couple of times.

So far, Beckett hasn't shown any bad reactions to the chemotherapy. He is on anti-nausea medicine and hasn't been sick yet. He doesn't really even seem too tired or down considering that he's had a very hard day.

Tomorrow Beckett goes back to Stanford for an MRI. It's important that we get it done as close as possible to starting the chemo, since the point of this MRI is to see if the tumor has grown between the last MRI and the start of his treatment. Beckett's grandmother (Pockaw) Barbara will take Beckett to the hospital and Cassie will join them later.

Beckett in OR

It's 3:40 PM and we've been at the hospital since 9:00 AM, and they just took Beckett into the operating room. To say the least, a stressful day, since Beckett hasn't really been able to eat or drink all day because he is doing general anaesthesia. At least at noon they told us that he was going to be delayed until at least 2 or 3, so he was apple to have a cup of apple juice and half of a popsicle.

The plan is for him still to have his first chemotherapy today, but we'll see how late it is when he wakes up and gets to the day hospital. I'll write again as soon as I have a chance to give an update.

Rescheduled Again

So, Stanford called us again today to reschedule the surgery, this time to Wednesday. As Cassie said, this puts things in perspective: there are other kids who need help much more urgently than Beckett.

So, the surgery is now set for Wednesday at 7:30 in the morning. It might be a long day at Stanford. I'll update the blog again on Wednesday as soon as I have a chance.

Set for Tuesday

As far as I know, we are going to have Beckett's surgery on Tuesday and start the treatment, but we'll see what the docs say. I think he is fine: his nose is still a bit runny but he is otherwise OK.

I had a good first week of school and Cassie just started back, so we've been under a bit of stress just because of that as well, but I like my classes this year and it turns out I don't have to deal with the newspaper. Ordinarily I would be very bummed about that, but in the current situation it seems for the best. I just don't want my school to lose the newspaper.

Beckett is doing so well, though. He has been putting two and even three words together all the time, just when we were worried that he never would. He says things like "Pockaw house" (grandma's house) and "yellow bowl" (when he throws a fit and tries to insist on a certain color bowl). He is very two, but also very cute, wanting to sit on my "wap" when he eats. Well, that's sort of cute. And he continues to sign more and more words as well.

I'll try to post as soon as I can on Tuesday and let everyone know what's going on.

Treatment Delayed

Sorry we haven't posted sooner, but my first day of school is tomorrow so I've been busy with that. Beckett's treatment has been delayed because he has a cold. We didn't even go to Stanford today because we talked to a doctor last night who said that it was unlikely they would do surgery if he had a cold. Basically, they don't do surgery with general anaesthesia if someone has a cold unless it's urgent.

I spoke to Dr. Fisher today and he said that one week wasn't going to make any difference because this is a long-term treatment. Beckett is fine except for the cold, and he's now on some heavy-duty antibiotics so that he'll be ready to go next week. We have the surgery scheduled now for next Tuesday, the 28th, and the first chemo treatment will still probably be on the same day.

Thanks to everyone for keeping us in their thoughts and prayers.

Back to Work

Cassie and I are back at work this week, and Beckett has started back to daycare. He's got a bit of a cold, so we are worried that the surgery won't go ahead on Monday. They may tell us on Friday night if it is a go or not, or they might decide on the day depending on how he feels.

People at work ask how Beckett is, and I tell them he's starting chemotherapy. I keep telling everyone that, honestly, it's not as bad as it sounds, but that it still sucks.

Back Home

Stanford finally scheduled Beckett's port surgery and first chemo for Monday August 20th at 10 a.m. We'll post as soon as we can after that and let everyone know how Beckett did with his treatment. He's also going to have another MRI on August 30th just as a new baseline.

The trip was great, and we're very glad we went. It was wonderful to see everyone in New Jersey and England and to get a chance to play with his cousins Milly and Jed. For a two-year-old, or with a two-year-old, it was a long trip, but it was very worth it. Also, we probably won't be able to go anywhere for more than a few days for a long time. I loved walking and running around London, and I had just started to feel like I really knew my way around Hackney when we left. Cassie even got to play in a cricket match!

In England (edited to add photos)

After a fun visit to New Jersey, we got on the plane for England. Beckett did very well with the 7 hour plane flight, and Polly met us at the airport with Baby Jed, who is extremely cute.

London is a great place for families. There is a walled park in a churchyard not far from Polly and James's house, and we also visited Victoria Park, which is huge and has many nice features. We are planning some more outings, but we are also just enjoying relaxing with Polly, James, Milly, and Jed.



Beckett and Milly, who is around Beckett's age, have been playing together very well. Today Polly cooked pizza and let the two of them help-- one of the cutest spectacles we have ever witnessed.


See the video.

In New Jersey

Today we visited Lucy, a six-story wooden elephant on the New Jersey coast. Beckett seemed to enjoy himself, but he wasn't so interested in the video about the history of the elephant, and we didn't get much of it either since he was running up to everyone and saying "hi." But we climbed up into the belly of the beast, a piece of New Jersey history that has served as a real estate office, a summer home, and a tavern. From the top of the elephant there's a lovely view of the shore.

Beckett does not travel well. He's having a hard time getting to sleep, and we're very tired. But Beckett is enjoying playing with Grandpa Oscar, Grandma Pat, and great-aunt Judy.

I played a game with him today in which I chased him around, and he loved it. He kept crashing into things, but it's hard to know if it's a weakness in his peripheral vision or just him being not so coordinated. The latter seems more likely.

We still haven't heard from Stanford about a date for the surgery and the first chemo. We will call them again soon if we don't hear.

Getting Ready to Leave for England

Beckett continues to be just fine. Since he has started to sign, his communication is really improving, too. Not that he couldn't communicate before, but he has had some trouble sometimes making himself understood (for example, he has trouble saying the letter 's').

Now he signs "Baby" and rocks his arms like he's holding one. Or he signs "silly" or "doll" or "home." I'm not even sure he knew these words two weeks ago. And he says his alphabet, sort of.

Beckett has no appetite to speak of, but that just seems to be because he is two. He takes one or two bites of food before saying "back" and pushing it away or even saying "bagosh" (garbage). We are trying to fatten him up a little bit before the chemo, but I think we would just settle for him eating more than a few bites of his food.

We are getting ready for our trip to New Jersey and then England. We are excited about Beckett seeing his grandparents and his cousins in New Jersey, and his British cousins, his aunt, and his uncle. And Cassie says that her sister has arranged for Beckett to go to his cousin's daycare on one or two days so that we can go out and explore London, maybe go to a museum.

We'll write again from the road and let everybody know how things are going.

Some Background

Because what Beckett has sounds so much worse than it is, we should probably explain why Beckett has this tumor and how it is different from other kinds of tumors.

Beckett has neurofibromatosis type I (NF 1), a genetic mutation that causes nerves to spontaneously produce little bumps (benign tumors).

Many people have wildly wrong ideas about NF.

Medical programs report on the very rare extreme cases of NF, and TV shows get it totally wrong. Some people get bumps over part of their bodies, but the range of the disease is usually from mild to moderate. Most people with NF lead totally normal lives.

These bumps are often on the skin and are usually harmless. If they get annoying, some of them can be cut off. These tumors are usually not treated because they are not like cancer cells that can spread to other parts of the body.

Tumors on the optic nerve are actually fairly common in children with NF, somewhere between 15-50%. They are usually not treated either, because most will never grow. Some will grow and then shrink again.

Beckett's tumor, however, showed a lot of growth since his last MRI, which is the reason for treatment now. As we've said before, this is not a life-threatening tumor. It isn't cancer. If someone who didn't have NF had an optic glioma, it would be a lot more serious. If we could monitor Beckett's vision closely, we might not be treating it either, but it's hard to gauge vision in a two-year-old.

For more information about Type I Neurofibromatosis, visit the Harvard Medical School Center for Neurofibromatosis and Allied Disorders here.

Signing Time

We will keep updating the blog between now and when we start chemo so that everyone will know we are doing fine and so that we will stay in the habit of updating it.

Beckett has a new favorite TV show. We recently bought the DVDs for the show "Signing Time," and it's one of the best kids' shows we've seen.

Don't worry, there' s nothing wrong with Beckett's ears. The series, designed for hearing kids and parents, teaches simple American Sign Language through singing and animation. Beckett loves it, and he's also learned some new vocabulary and a few new signs. He said "I love you" (sort of, it sounds more like "lalu") for the first time after watching the Signing Time video about family.

We can't say enough about this series, and we've been inspired by the story behind it. Rachel de Azevedo Coleman, who created this program, learned to sign after one of her daughters was born deaf and another daughter was born with spina bifida and cerebral palsy. You can read her story here.

Consultation with Dr. Fisher

We had been dreading today for a week, but of course it was a relief to finally talk to the doctor and have our questions answered. We both feel reassured.

Doctor Fisher told us what we already guessed. Beckett is going to have weekly chemotherapy for 60 weeks or so, with some weeks off. The drugs used in the chemotherapy are carboplatin and vincristine, some of the milder drugs as far as chemotherapy goes. We will bring him to Lucile Packard Hospital at Stanford, which is just over an hour away from us, every week for his treatments.

Even though Beckett's vision doesn't seem to be affected yet (although it's hard to tell, with a two year old), we saw the tumor and it had grown significantly compared to the last MRI. If we had been undecided about whether or not to give him chemo, this would certainly have convinced us, but we were already thinking that treatment was the right choice.

This a totally different kind of tumor from the type that can spread to other parts of your body. So, it's worth repeating that Beckett is not in any mortal danger, even though "brain tumor" sounds really, really bad. If it wasn't for the fact that it is in a very inconvenient location (the optic nerve) and that it had shown this quick growth, we wouldn't be treating it at all.

Apparently, Beckett will be able to do most, if not all, of the things that he normally does. He will be tired on the days when he gets chemo and maybe on the next day, but he should still be his normal self. The side effects should be fairly minimal, but they will be watching his blood counts closely. On days when his white cell counts are low, we might have to be a bit more careful.

A piece of good news is that we will still get to go on our trip to New Jersey and to England as planned. We will return on August 10th and Beckett will get his first treatment on the week of the 13th.

Beckett will get the drugs through a port that will be implanted in his chest. The port doesn't sound as bad as we had thought, either. There won't be anything visible on his skin except for maybe a slight bump; I had been afraid that there would be leads dangling out of him. The port just makes it a lot easier to hook up blood draws and administer the chemo since you don't have to look around for a vein each time. Getting the port is outpatient surgery, and he'll get it on the same day as his first chemo treatment.

Overall, we think we are in very good hands at Lucile Packard and with Dr. Fisher. We aren't looking forward to this, but we know it's the right decision. How hard it will be, we will discover.

Beckett's MRI

On Monday we had a call from Beckett's neuro-oncologist. Since he had just had an MRI, this couldn't be good. Dr. Paul Fisher told us that the tumor on Beckett's optic nerve had grown surprisingly since the last MRI. Of the 25 doctors on the tumor board which reviews patient MRIs, everyone agreed that it should be treated, and the likely treatment is chemotherapy.

The good news is that Beckett's life is not in any danger. The chemotherapy will be very hard for him and for us, but it is necessary to protect his vision and to prevent further problems. We have 100% confidence in Dr. Fisher, and he seemed to think that this was a problem that could be solved.

About 55% of the time, chemo stops the growth of this type of tumor. 30% of the time, the tumor actually shrinks, and 15% of the time the tumor keeps growing. But even in that case, I'm sure there are other treatments available.

This is all very new to us and we are just trying to figure out the logistics of how chemo will work. We'll know more after Monday when we will talk to Dr. Fisher in depth, and I'll post what I find out on this page.