Blake painted this mask at the hospital Halloween party today.
Healing--updated
Monday night eating resumed. By 3:30pm on Tuesday, 5 Derksens were home together. It is amazing how joyful these small celebrations have become. Even Dodger seems to appreciate having all of us together.
On Thursday, Blake will go see Dr. Bedros. He received no chemo at this last stay. It was only pain and nutrition maintenance regarding the mouth sores. He also received a unit of platelets. His body's ability to produce healthy blood is not like it was, due to all the chemo. Hopefully his mouth will be sufficiently healed and his blood at good levels so he can go get his last dose of Red Punch. Last time that took only 48 hours total.
They moved the next Yellow Slime to the end. So we will finish up with 3 methotrexates in a row. They may have to space them out a bit to prevent mouth sores. We're sure praying that we've seen the last of these mouth sores. But we've been told that once they start, they're more likely to recur.
Pain
Blake was admitted on Thursday morning. The mouth sores were so bad and so painful (he and Jen were up for over 2 hours in the middle of the night, Wednesday) that they immediately gave him morphine and a fast, large hydration dose. His counts were then measured and while his hemoglobin is normal, his white blood cell count and platelets are very, very low.
So no chemo. They are given IV food that started at 9pm on Thursday and will run for 24 hours. We're not sure how long they'll want to keep him. He's on morphine every 4 hours and a variety of other meds to help with the sores.
Prayer appreciated, as always.
4 more
Blake checked out of 4200 on Tuesday--six days like normal. He got 2 units of blood because his hemoglobin wouldn't come up. That usually helps his energy a lot, but mouth sores are lingering right now, so he feels lousy. On Thursday he should be able to back to 4800 for chemo number 15. Hopefully they will have a bed in the morning. Please pray that his mouth sores heal quickly. We're amazed and thankful that we're still on the original post-surgery timeline!
10/11/12
And back we go. Our usual floor is full, so we're on 4200 instead. The guest "beds" are new and bigger! Bonus! They think they can hang chemo tonight, so that would be fast. Yellow slime, 4 hour dose. We're actually on schedule, which is a surprise. Blake's hemoglobin is right on the edge. The oncologist said he might need blood next visit. After this one, four left!
Animation
Blake worked really hard this week on this animated sequence. Everything you see was made from scratch. It's hard to communicate what that totally means, but suffice it say that there are no pre-done templates here. He starts every object with basic polygons. He also recorded a number of the sound effects himself. Enjoy!
Up, up and away
Blake went in for chemo on Tuesday afternoon and came home on Thursday afternoon. If that sounds like the shortest stay ever, you're right! This is what happens now that the Red Punch is one type of chemo only.
Blake worked for quite a while with the physical therapist today. She taught him how to use one crutch and climb the stairs. No more scooting up and down the stairs! This is another exciting milestone towards normalcy.
We'll go back to the clinic on Thursday to see if he can get more chemo. A nurse practitioner explained to us that his body will regenerate healthy blood more slowly, as his bone marrow has been through so many months of chemo. So we hope that we can continue at a good pace, but realize that delays are almost certainly part of finishing up.
We're all tired. Prayers for a restful and restorative weekend are appreciated.
There and back again
Blake's platelets were too low for chemo. He checked in on Friday, checked out on Saturday morning. Ah well, a nice weekend at home. On Tuesday he'll go to the clinic and have his levels checked. If they're high enough, he'll go straight to the hospital for chemo.
Briefly
Blake came home at about noon on Wednesday. He had an echo at 4pm that afternoon in preparation for his Red Punch. He will go back in Friday morning. Since he no longer gets Cisplatin, this round should be quick. Two 8-hour doses, then hopefully home on Sunday.
We are officially done with 4 out 6 chemo rounds. Two to go. Each round is: red-break-yellow-yellow. And then its over. Hopefully forever.
First Steps
Back in April, as this journey began, we had a newcomer at our home. A small sparrow built a nest in our back patio. I wanted to stop it and avoid the mess, but the kids begged to let the birds make their creation in a place where we could watch. When we cut Blake's hair off in the back yard, some of his hair ended up as nest material!
Mother and father built a nice little nest and soon we had eggs. The nest became of symbol of something more (read Jennifer's original nest post for more details). Of life and new beginnings. Of birth and rebirth. Of leaving the nest. And the freedom to fly.
One facet of this journey that we didn't talk about much was Blake's fragility. The oncologist told us from the very beginning that if Blake fell and broke his weakened bone, they would amputate immediately. So while we could not keep him safe in a nest, we cringed a bit with every trip down and hallway and every time he crutched it out to the car. We knew that a mis-step could have a calamitous result.
We watched as the mother bird fed her chicks. They grew quickly. Towards the end of May, the mother stopped spending time at the nest. On May 31st, there was flight:
In June, the tumor was removed, Blake's leg was saved and we rejoiced. The surgery went well and the doctor was pleased. But chemo slows healing. So Blake was not cleared to walk for June. Nor July.
But on Tuesday, September 25th, for the first time in 152 days, Blake walked.
It was a very, very good day!
a small delay
The floor was booked on Thursday, so we didn't get in until 7pm. Chemo hung on Friday (Yellow Slime) just before noon. It is clearing ok, but it is looking unlikely that he will be ready to go home until Wednesday. If that's the case, they will probably just keep him on the floor and start the next dose (Red Punch).
The test results came back fine. His bone scan is clean and his lung nodule maybe (measurement error?) grew by a millimeter. They continue to think that his lung nodule is a pre-existing bit of scar tissue. But the Tumor Board will discuss it to make sure.
The orthopedist ordered another X-ray and will probably report sometime soon if he can walk yet. I took a picture of his legs side-by-side so you can see what happens if you don't use a muscle for six months!
A small delay
On Thursday, there was no room in the inn. So we waited all day. At 7pm, we got the call to come in. Chemo was hung (Yellow Slime) at 11am on Friday. As usual, Blake's body doesn't seem to be in huge rush to get rid of it. We're guessing he won't get cleared until Wednesday. If that happens, it sounds like they wouldn't send him home at all; they would just move right along to the dose of Red Punch that's due. We're hoping that means he would be done and home by Saturday. So all in all, it would be a trade off: in a day late, no break, home a day earlier than expected.? Then a break for a week and a half or so.
His bone scan and chest ct look fine. The nodule in his lung has changed by another mm, but they aren't worried. His leg was X-rayed again and Monday we'll hear from the surgeon if he can start walking again. Here's a photo of his legs. His left leg clearly needs some exercise!?
?
On we go...
Blake came home on Tuesday morning. He was extra happy to be home. Back to it on Thursday, though. More Yellow Slime. So we expect a Thursday through Tuesday stay. Going home on Monday would be a treat. You could pray for that. When we go in on Thursday, we should get the results of his bone scan and chest CT. I'll try and update the blog as soon as we hear.
Donuts
Mmmmmm. Donuts!
Chemo went in Thursday night. His steroids not only keep the lung pain away, they keep the nausea away and make him hungry!
Tests are ordered and they'll check everything on Monday or Tuesday, depending on how fast his methotrexate levels drop.
Better
Blake's mouth got a lot better over the weekend. He's back to normal eating. Mostly normal. Nausea still lingers. Goodness we hope that the end of cisplatin will mean the end of such nausea.
Right now its like a taking a deep breath before jumping off the high dive. Ready, set, Thursday's coming!
Thanks for the prayers!
Prayer, tests and schedule
Well, Blake got some nasty mouth sores from the chemo. He has sores lining both sides of his tongue. Its very painful. We're hoping that the sores will fade this weekend and Blake can get back to eating and enjoying time at home. Please pray.
When we head back to the hospital on Thursday, Blake will get a full round of testing. That means chest CT, full body bone scan and an MRI with contrast. Fortunately, his port allows all the extra dyes to be added without extra shots, so that's a happy thing. Blake will also be getting chemo on Thursday. Given that all these tests come back clean, here's the plan:
- Yellow-Yellow-Red (3 consecutive Thursdays: Sept. 13, 20, 27)
- One Thursday off (Oct. 4)
- Yellow-Yellow-Red (Oct. 11, 18, 25)
- One Thursday off (Nov 1)
- Yellow-yellow (Nov 8, 15)
And then done. That last dose will be just in time (we hope!) to arrive home for a very thankful Thanksgiving.
The next round of testing would be in December. A 3-month check-up for a year or more.
Waiting game
Blake came home on Sunday. Spirits are still high and now we're on a two and a half week break!
We saw Zuckerman (the orthopedic) today. He took another X-ray and likes the look of what he sees. But he still wants to wait another month before he green lights weight-bearing. So we wait.
Overall, things are chipper and busy with the school year under way. Please keep praying! The end is near. But we don't want to see this cancer pop-up again!
Cool
Blake is getting a new anti-nausea drug that is working amazing. He ate all day. He's in great spirits. The doctor said he might send him home Saturday! That would be the shortest stay ever. We'll see. The second batch is going in from 7pm Friday night to 7am on Saturday morning.
The end
Last cisplatin. Started 7pm on Thursday.
Nine more...
Blake came home on Tuesday afternoon. Did I actually say we were hoping for Sunday? Ah well. Things went fine. But it just took awhile for all the Yellow Slime to leave his body. On Tuesday, when the Yellow Slime was almost gone, they gave him a few units of blood because his hemoglobin levels would not come back up.
Wednesday morning he gets an ear check. Thursday he goes back in for Red Punch. Then a break for a couple of weeks. Hooray!
He has 9 treatments left. They come in sets of 3. One Red and two Yellow. We hope that we can stay on schedule and be done by Thanksgiving.
We are excited about this next round, because the Red Punch is about to get better. For those of you who want some details, keep reading. So far, every time he gets the Red Punch, he's been given two different drugs. 8 hours of doxorubicin and 4 hours of cisplatin (given twice! so 24 hours of chemo over 2 days). The cisplatin is particularly strong. It has hearing and cardiac potential side-effects. It also causes extra nausea. This coming treatment will be the END of cisplatin. As you read above, he'll still have two more doses of Red Slime. But they will be only Doxorubicin. That means no more ear checks, no more echo-cardiograms, no more cardiac leads and hopefully less nausea.
Hopefully this all makes sense. Thanks for all your prayers. We're looking forward to a big break in a week.