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.