Blake got a new origami book from Christopher Stamper and his fire station. This tree frog was 101 steps!
Back to it
Headed back to LLU this Wednesday morning. More yellow slime.
Got a ton more of the Pray for Blake bands. We will keep some at home and some at the hospital. Holler if you'd like one or more.
Home for 48
Blake was sent home on Monday around noon. He's feeling pretty good. In the end, they have concluded that the Yellow Slime irritates the lining around Blake's lungs. This is a side-effect that is very rare. But it seems to hit Blake everytime. So from now on he'll get steroids to go with the chemo.
Blake's very upbeat and happy to be home. We'll go back on Wednesday afternoon.
Fun at home
Blake's in a great mood. Quality time with Jacob.
This round
Chemo went in late Wednesday night. Thursday was nausea day. Late Thursday night a second drug started that chases out the chemo. He gets the chaser every 3 hours. On Friday he was eating again. They monitor the chemo levels to make sure it's leaving. At first it was leaving a bit slow, but then it picked up pace and should be gone by Monday morning. They also monitor his kidney function carefully and that is doing well. So that's all good.
But Saturday the side-effect started again with the lung pain and difficulty in taking deep breaths. Blake is very thankful that there was a plan in place for this side-effect. At around midnight they started giving him steroids. And pain meds. As of Sunday morning, his breathing is still fairly shallow and he is still requesting pain meds. But he is thankful that the steroids have already started. Please pray that they will work and that he can go home Monday. His next chemo is Wednesday and he would like to have a few days at home.
Update: Just had an encouraging talk with the doctors. The current treatment Is working and they hope he can go home Monday morning. Next time they want to give an anti-nausea med that has a steroid in it. That way they proactively counter-act this lung problem. The journey continues.
Ready, set, .... Pray!
Blake started chemo on Wednesday night. Yellow Slime. More chemo (yellow) in a week. Surgery the week after that. Chemo (red) the week after that. This is the toughest month. Please pray.
Miscellany
If you still want to give blood for Blake, just head down to LifeStream and by giving them his name, the blood will be in his honor. I chatted with Maryanna, the coordinator. She said this is the best route. She also said that they were VERY pleased with the turnout and that the volunteers were fantastic. She said she wished she had more coordinators like Catrina! You can give a "directed donation" to Blake. But then you need to have A+ blood (like him) and there is a fee. Also, since there are no current blood orders for Blake right now, the donation might expire before he can use it.
We ordered more of the silicon "Pray for Blake" bracelets today. Many thanks to Stefani and David for the first order. They'll be here in a week. Let us know if you've been wanting one.
Finally, Blake's youth pastor said he'd shave his head if there were more than 100 pints donated. That was exceeded by a lot! So here are some fun pics from Sunday.
Blood drive redux
A few more thoughts on the amazing support at Thursday's blood drive. 3 of Blake's teachers were there. Most of our Bible study group. Lots of kids from the youth group, including most of the small group I lead. Jacob's principal and PTA president came. Tons of friends from church. My principal, her husband and a colleague from Rancho. Jen's co-workers. Friends of Jennifer's who she has known for decades. I hope I didn't skip anyone. We are grateful and overwhelmed.
We are working on information for people want to donate in Blake's name.
Blood drive
Our good friend Catrina Mason set up a blood drive in honor of Blake. About 200 people came out on Thursday with a final total of 159 pints donated. It was overwhelming to see so much support. The donor beds were full from 2pm until close at 8pm. Great for Blake and great for the community.
Donating Dad
Mom and Grandma!
Looking back and looking forward
Blake met with his oncologist Tuesday. He continues to be pleased that the chemo appears to be working. Here's a synopsis of what's been happening and where we're headed.
Blake has received four doses of chemo. They are hopefully killing the tumor in his left shin. Each dose of chemo is given over two days in the hospital after which there are a couple of more days of rehabilitation before Blake goes home.
On Tuesday, June 5th and the following Tuesday on the 12th, Blake will get his next two doses (given that his immunity is strong enough, no fever, etc...). This will be the Yellow Slime. It has less nausea, but can cause mouth sores. So far Blake has managed to avoid getting mouth sores.
The last time he received Yellow Slime, it leaked into the fluid around his lungs and he had quite a bit of pain and trouble breathing. This is a very rare side-effect and the doctor doesn't know if it will happen again. He did say that he will treat Blake with steroids if it does occur again. It is good to know that there is a plan in place. But given that Yellow Slime is going to be his most frequent chemo, we're obviously praying that this leakage does not happen again.
Sometime during those two chemos, Blake will get a MRI. This will be used to decide what type of "limb salvage" surgery will be used. Surgery will be about a week after the chemos. Possibilities include using cadaver bones, using a piece of his fibula, amputation and more.
One week after surgery, more chemo will ensue. The roadmap schedule has 12 post-surgical chemos that will take us up to the end of October. Hopefully by Halloween/Thanksgiving we can have a big Remission Party!!! When we were at the oncologist on Tuesday, we heard him say to a patient (who had a full head of hair) "See you in a year." We pray for an appointment like that!!!
Weekend fun
Blake was really hoping to have some Kogi BBQ this weekend. This is a food truck business that can be found in LA and Orange County. We were prepared to go for a drive, but to our delight, a local home builder brought in one of the trucks as a promotion. Delicious!
We also went to a friend's graduation party and to another friend's confirmation celebration. A fun and busy Saturday!
Victoria got to go down to Spirit West Coast today and Jacob is spending the weekend with a friend up in Mariposa.
Good times!
I feel good
Blake is feeling pretty good. We went to see The Avengers (early matinee when the theatre was mostly empty) and picked up his favorite burrito. It looks like we're going to have a nice couple of weeks at home, just like we hoped and prayed for. Praise God!
Jennifer says
Shortly after Blake had to shave his head a small bird started building a nest in our patio eaves using the hair left from Blake's newly shaved head. Over the course of a couple of weeks it was fascinating to watch the bird carefully place each piece of grass, hair, and other miscellaneous items into the nest. Soon thereafter the bird spent weeks sitting protecting the eggs that were developing in the safety of the cozy nest. Saturday we saw for the first time mama coming with food for her small featherless babies. Each day she dutifully leaves the small birds to find food for them. They now eagerly poke their small beaks upward waiting for the nourishment their mom provides.
Luke 12 talks about sparrows and hair:
Are not five sparrows sold for two pennies? And not one of them is forgotten before God. Why, even the hairs of your head are all numbered. Fear not; you are of more value than many sparrows.
This bird and her babies are a daily reminder to our family of how much God loves us and knows us.
A break
It's Saturday night and we are home. Hurrah! Blake still has some nausea, but we should be good to go on oral anti-nausea meds. We aren't scheduled to go back for over two weeks.
Please pray for:
- A great time of rejuvination at home
- No fever or other complications
- For nausea to go away
- A good healthy appetite
Next...
Chemo was hung Tuesday afternoon and also on Wednesday afternoon. Today was sleeping-through-the-nausea day. We are hoping he can start eating soon, and maybe go home on Friday. If he doesn't get discharged on Friday, they'll have to remove his port access and redo it (it lasts only a week). After this we get two and a half weeks at home.
Waiting...
When will I learn to stop predicting WHEN the chemo will hang? Not tonight.
We did find out today that this delay in the roadmap (chemo was supposed to start Thursday) pushes his whole calendar back. So we still get over two weeks off once this round is done.
Faith
Chemo will be hung Monday night, after shift change. That means 8pm or later. assuming all the i's get dotted and t's get crossed.
A couple of days ago, after a lousy hour of symptoms, Blake turned to me and said "God is faithful" and smiled. I thank God for the strong faith of my son.
Old School
Having fun today with an old video game. Overall, Blake's feeling a lot better today!
They will start the chemo (Red Punch) 5pm Monday.
Saturday night
Tonight Blake is receiving a blood transfusion due to declining hemoglobin levels. Dr. Bedros said that this should make him feel better quickly. And our nurses reassured us that this is very common for the patients on our floor. Blake had an initial reaction to the transfusion that was negative. But Benadryl was administered and had positive results.
Blake's transfusions are done through his port, so they are completely painless.
Please pray that these transfusions go smoothly and re-energize our son.