Results

We saw Dr. Bedros, the oncologist, on Thursday. The first words out of his mouth were "Everything looks good." The second were "See you in 3 months" We're ecstatic!

Physical therapy is ongoing. The surgeon may still want to remove one screw to facilitate the grafting process. The port comes out next week. It will be 3 months until his immunity is full strength and 6 months until his stamina is back.

But we are clear and we are free and it feels great. Many thanks to God!

Scans

Hey folks! Jen and I are both itching to type up some of our thoughts and emotions as we've traveled this path. Hopefully some of those posts will be coming soon.  Here's a bit of info for the present.

  • On Friday, Blake got all his scans done again. This Thursday, we'll hear what the doctor thinks about them. Hopefully we are cancer free and will be on a monthly check-up with a three month scan schedule.
  • The joint pain went away. The doctor thought it was the steroids. Maybe. He was quite mystified actually and said that this wasn't a typical post-chemo reaction. He said to get a massage, which our great friend Shawn Baker provided. Since last Saturday, he's been off pain meds. His stamina is growing.

So in a hopefully not premature celebration, we are headed to Disneyland today. Jennifer's family all joined in and we're all getting annual passes. We hope and pray that we'll have a fantastic 2013 with no cancer and lots of Disneyland. That would be quite a change.

Christmas

We've been home for over a week. It's been nice, but Blake has had pain in his joints on and off throughout the week. It wakes him up in the morning and he been taking a prescription narcotic he had left over to deal with the pain. We haven't been worried, since the pain has been all over the place: both knees, both elbows, and both hips. Stretching seems to help and our friend Carol helped with that. As did a phone call from his physical therapist at the hospital.

Christmas Day, Jennifer took a bunch of food to Blake's floor at the hospital. While she was there, she asked several nurses about Blake's pain. They all confirmed that it is fairly common to have about a month of joint pain after finishing one of his particular chemos. This is a great relief. We're not sure why none of the oncologists mentioned this, but it is good to finally know that this is typical and finite.

In more traditional Christmas news, we had a great Christmas Eve with Jen's side of the family.  The whole gang is buying each other Disneyland Annual Passes for presents, so there wasn't much to open. But the food was great and we had a very nice evening. We started with the early service at our church.

Christmas Day was low-key. Just the 5 of us hanging out all day. Victoria and I have a new book, which is the best way to keep us happy. Jen bought a bunch of Mythbusters bobble-heads and signs, so that was a hit.

Hopefully Blake's energy level continues to increase and his pain decreases. Once his stamina has increased, we'll head off to buy our Disneyland passes!

Merry Christmas to all!

Briefly

Blake's mouth is healing and we're optimistic that he won't get mouth sores. On the down side, his good leg has been hurting. It seems that walking with the cane is fun, because he can hold something in one hand, but hard on his right leg.  Blake also has very little energy.

But we're home and enjoying each other. And Christmas is always awesome.

Home for the holidays

Blake came home on Sunday afternoon.  That was our 116th hospital day. We see the oncologist once a week to check his levels.  As long as he stays healthy and free of mouth sores, we should have a spectacular two weeks at home for Christmas. He's still pretty low energy wise and is supposed to ease into being around lots of people. We're planning a weekday morning Hobbit viewing and a Seoul Sausage trip sooner than later!

Home and back again

Blake came home on Sunday afternoon. His chemo level dropped much faster than anyone expected. We were thrilled to gain an extra day or two.

On Tuesday he sees his doctor at 11am. We're hoping that he gets cleared to go to the floor for his very last treatment. The floor was only half full when we left, so we shouldn't have to wait for a bed. Blake's blood levels were strong when we left, so we're optimistic.

Hard to believe this might really be over.

1 to go!

Tuesday night we checked in at 8pm. At 6pm on Wednesday they gave chemo #17. It will probably take until Monday to clear.  One to go. Blake's counts are high and the doctor thinks we can get the last dose in next week! Maybe Wednesday?

Physical therapy continues to go great. Blake now walks with a four-pronged cane (just like Mr. Frederickson's!? Should we put the tennis balls on? We'll have to ask!).

On Friday night we all went down to the second floor for Grandma and niece Emmy's birthdays. There's a lobby on the second floor that is usually fairly empty. We had a good time with some tasty Italian from Alfredo's.

We're not totally clear on the timing of the next steps. Blake is due for another round of tests. It sounds like those might happen after Christmas. Given that those are clear, he would see his doctor once a month and get re-scanned every three months. With this type of cancer, 18 months of clear scans mean that the probability of recurrence drops to almost zero.

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Another week

Blake went to the doctor on Tuesday and his blood was not ready for chemo. His immunities were too low and his hemoglobin also very low. We were expecting the latter, because when his hemoglobin is low, he has very little energy. In fact, a couple of times, he's felt like he was going to black out. He chose to sleep downstairs rather than risk the stairs on Tuesday night.

His doctor had him come to the outpatient clinic for a blood transfusion on Wednesday morning. Before he made it to the clinic, he blacked out. Fortunately Jen was right there and could help him sit down and he didn't get hurt. With some help, Jen got him to clinic safely. The doctor saw him and said that the blood should help. He was feeling a lot better on Wednesday night after the transfusion.

The doctor wants to see him on Tuesday. He will hopefully go from that appointment to check-in for chemo #17, his second to last treatment.

Thanksgiving

We had a nice time. It was very low key. Just family. Blake said he enjoyed the day very much.

Now we're passing around a lousy cold. It was short for Victoria. It's been lasting for Jen and Jacob. Blake is still trying to shake what he had in the hospital. Hopefully its done by Tuesday when he next sees the doctor. We'd love to have the second to last dose this week.

We have much to be thankful for. I look forward to writing about that more later.

10

Tonight Blake said

"I got out of the shower and felt a little grumpy. Then I looked down and saw that I have ten toes. And I thought, why should I be grumpy?"

My son rocks.  

Happy Thanksgiving to all!

Room with a view

Well, we finished the last round of Red Punch! Two to go. We were in the same room as the room we started. I took a picture of the view from the room and of Blake in our room.

We arrived on Thursday and Blake had a small cough. By Friday morning, he felt much worse and was coughing quite a bit. So they moved his roommate and turned his room into an isolation room. Good news: lots of space and freedom. Downside: the nurses come visit a bare minimum because they have to put on a gown, mask and gloves and we wore a mask the whole time.  Pretty much half the floor had a similar cold and soon there were as many isolation rooms as not.

Also, Blake's right knee started hurting on Friday. We're still not sure what's going on there. If he had a tumor, it would have been found long ago. He had pain in this knee a few months before his diagnosis.  My guess is that he aggravated it during physical therapy.

Much to our surprise, they were willing to start chemo on Saturday afternoon. He got his chemo from 6pm to 2am on Saturday and Sunday nights. On Monday they gave him one last dose of IV antibiotics and sent us home.

They want this cold and cough to heal completely before his next chemo. We have a clinic appointment for the Tuesday after Thanksgiving. His last two rounds are the Yellow Slime.  That usually six days for each, so hopefully only 12 more days! We're really hoping to finish before Christmas.

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Last Red Punch

Checked in tonight at 8pm. Blake saw both doctors earlier in the day and everything looks fine. He should get doxorubicin Friday and Saturday. And hopefully home on Saturday night. This is last dose of this type of chemo.

His oncologist wants him to return next Friday. That would leave only one treatment for December. That would be awesome.

3 to go

Blake came home mid-day on Tuesday. We were hoping for a Monday discharge, but his levels would not cooperate. He has been getting lots of great PT in the hospital, so that is a good thing. His therapist said he's up to 40% weight on his left leg.

On Thursday he goes to see both doctors. The orthopedic wants to look at his toe and the oncologist will check his blood to see if he is ready to go for another chemo. We hope that he can go from these appointments to get his last dose of Red Punch. These doses only take 48 hours, so then he'd be home Saturday or at least Sunday and have Thanksgiving week off.

Breakfast of champions

It's Wednesday night and Blake's six hour pre-hydration has begun. They should hang chemo first thing in the morning. This will officially finish round 5. Our 15th chemo. Hurray for another step taken.

Blake has had lots of PT the last few days and he's really been pushed. He's making good progress. They took yet another X-ray of his leg and its looking good.

Checked in

Blake's fever went as high as 100.4 on Sunday night. When he woke up during the night, it was 99.2.  By morning it was normal. He checked into our regular floor mid-morning and now the testing has begun. They're running a variety of panels to see what caused the fever. And they put him on IV anti-biotics. So no chemo yet. We have no clue how long until they will ok him to start.

Fever

Elvis had a fever. Unfortunately, so does Blake. The doctor said he should just wait and come in the morning. Last time he had a fever, they kept him in isolation until it went away. Then the chemo came after that. Hopefully this won't delay things too long. Blake feels achey and we're hoping for a good night's sleep.

Not yet

Blake has an ingrown toenail. Given his risk of infections right now, the oncologist wanted to see him on Tuesday. He put Blake on a strong antibiotic and tested his blood.  His counts are all great. He then set up the following new plan:

  • Monday, November 5th: Methotrexate, (Yellow Slime).  We'll report directly to the floor, as his blood is great. We anticipate he'll be in until Friday or Saturday. Hopefully, NO mouth sores.
  • Monday, November 12th: Last dose of Doxorubicin (Red Punch). That was a two day stay the last time. Which means that we'd get a two week break most of the week before and week of Thanksgiving.  Which would be pretty awesome.  All of us have no school the entire week of Thanksgiving.

As we've seen too often lately, these plans often have to change. But hopefully this part will stay intact. It would mean a nice turkey break and only two treatments left between Thanksgiving and Christmas.

Due to Blake's increased weakness and struggles with keeping his counts, his oncologist has recommended no crowds until we are done. So no church or other group activities for a while.