Blake's good friend Charlie was at Loma Linda Thursday night--for an emergency appendectomy!! On Friday, Charlie and his mom snuck over to Blake's room and had a great chat with Jen and Blake. Charlie is recovering very quickly and went home that afternoon.
Dr. Bedros rocks
After almost a week of wondering why Blake was feeling so lousy, we finally had a good chat with our primary oncologist and got some good answers. The short answer is that Yellow Slime when given at high doses can sometimes (rarely) leak into other parts of your body. In Blake's case, this leakage included the fluid around his lungs. This is what caused Blake's shortness of breath. It is even present in his tears, which explains his watering eyes. No one knows if this will happen the next time or not. Every patient is different. This is a rare reaction, so we can hope and pray that this won't happen again. (Actually, even if it was common, we could still pray...!)
Dr. Bedros also looked at Blake's leg and said it looks wonderful. Blake can't remember the last time he felt pain in his leg, which continues to be the best news of all.
And as usual, Dr. Bedros took a little extra time to chat with Blake. When the doctor found out that Blake was taking Latin, they had an awesome chat about the wisdom of that choice as the source of so many other languages. Dr. Bedros asked if Blake knew what other language he should study if he really wanted to know the foundation of language and Blake quickly replied "Greek"! We were cracking up listening to two bright people clearly enjoying a similar perspective on the world.
It is such a relief to know what is going on with Blake. Dr. Bedros several times referred to "the learning process" as we walk this journey. We are so thankful that we've learned what happened last week and feel ready, with God's grace and the doctor's expertise, to face the next steps.
Word
Anyone have some scripture to share today? I'm sure many of you have passages that would encourage Blake and our family. We'd love it if you wrote some verses into the comments. Biblegateway.com is my favorite website for this, if that's helpful.
Thanks!
Next steps
This stay home has not been pleasant. Blake has muscle tightness in his upper body, a low-grade fever and shortness of breath. His crutches hurt his upper body, so his movement around the house has been in a small wheelchair. Physical therapy from our friend Carol continues to be the main source of relief. But he's in enough pain to be using Norco again.
Thursday morning we're back in for more chemo. Red Punch this time, which means two 12 hour doses and nausea for a while.
Please pray for wisdom as the medical team evaluates Blake when he checks in.
And please pray for our family. We are feeling worn thin.
Our God is good. We continue to rest in His peace and pray for His mercies. We cry out to the Holy Spirit to intercede for us when our words fail.
Answers
Our good friend Carol guided Blake through at least two hours of physical therapy (and prayer and scripture focus). His upper body is in so much pain--this process was not very enjoyable. But as it progressed, his ability to take deep breathes gradually improved. We are all very encouraged that Blake has a real solution to the pain he has been having. He is going to have to battle to keep making progress. But in light of the improvement we've already seen, it is clearly worth it.
Thanks to God for his answered prayer. Carol rocks!!!
Please pray that Blake can be breathing deeply again by the time he is back at Loma Linda on Thursday.
Lousy
Please pray. Blake just feels lousy.
At home
Blake came home Monday afternoon. His leg looks great.
He has some shoulder and chest pain. He's taking some pain medication, but doesn't feel great even on that. They've taken all precautions and feel his heart is fine.
Another surprise bit of good news is that Yellow Slime doesn't have a side-effect of decreasing his immunity. His blood counts are all at normal levels and will apparently stay there. It's nice to know that he won't be extra-susceptible to illness when he gets this treatment.
The Eagle Has Landed
Passing the time in the hospital.
One more day
Blake's Yellow Slime (Methatrexate for the medically inclined) is at 0.23. That means Monday morning it should definitely be below 0.1 and they'll send him home.
His leg really looks spectacular. There is virtually no rise at the point of the tumor anymore. That is so encouraging. I also had a nurse tell me that the absence of pain is another good sign. We had been attributing the lack of pain to the change of using crutches and not putting any weight on the leg. But apparently if the chemo isn't working, the pain would increase.
His chest is still hurting. Please pray.
For what it's worth, I've tried Feed My Inbox for a few weeks now. It works pretty awesome. It will email you once a day with updates from the blog. So if you're more of an email checker than web surfer, this might be handy for you.
In short, home tomorrow and then back on Thursday for a big dose of Red Punch (doxorubicin and cisplatin).
Ups and downs
Friday was nausea day.
Saturday was better and worse. Saturday he ate. And his level of Yellow Slime is dropping faster than last time.
But his chest started hurting some. For pretty much his whole life, Blake has had chest pain when he's stressed or anxious. But it's no fun when you're already sick. And obviously doctors and nurses don't like to hear about pain like this.
They took an EKG and a chest x-ray. Everything is normal.
But it still hurts to take deep breaths.
Please pray.
Chillaxing
Hanging out at the hospital Friday night.
And... we're back
Back in the hospital. Chemo round 3. I'm officially naming his chemos, one is red and one is yellow, so with the smallest bit of creativity, I introduce to you,
Red Punch:
- Two doses that take 13 hours each
- Nausea is a major side-effect
- Hospital release largely dependent on nausea stopping and eating resuming
Yellow Slime:
- One dose over 4 hours
- 24 hours after dose a "chaser" drug is given that helps take it out
- Mouth sores the major side-effect
- Release keys on the yellow slime leaving. When it has left his body, he gets to leave the hospital.
The other factor that will come into play is his white blood cell count. All these drugs zap his body's natural immunities. If those counts are too low, they won't send him home.
This visit is Yellow Slime. So far everything is smooth. It would be nice if chemo started BEFORE 6:30pm so the dose is finished before he's sleeping.
Update: we started yellow slime at 5:50pm. Yay! Better sleep for Blake (and Dad!)
Back to Redlands
Blake was discharged and came home Monday at 4:30pm. He's feeling pretty good. Chemo drug #2 causes mouth sores as its primary side-effect. In Blake's case, the sores have been in his throat. Jen's working on soft foods that go down smoothly.
No doctor appointments for the next few days.
We check back into Loma Linda on Thursday for another round of Chemo #2. Hopefully there won't be much to report between now and then.
Brothers
Hanging out.
Side effects worse today. Plus he has sore tooth and might be getting a cavity.
Prayer for a better day tomorrow.
Counting
His methotrexate level is at 0.56. They'll check it again tonight. One more day in the hospital.
Sigh.
Om nom
He's eating again. They are tracking how much of the chemo is still in his body. They want it out and gone. They gave him a drug that binds the chemo and helps him pee it out. It has gone from 758 to 65 to 13. When it is less than 0.1, he can go home. Hopefully Sunday?? We'll see. I'm going to grab my calculator and see if I can get enough data from the nurses to predict the rate of decay. That's what happens when your dad teaches math.
Effects
This round of chemo is going fine. Blake's feeling somewhat nauseous and has eaten sparingly today. But he's on minimal anti-nausea drugs compared to round 1 and has chosen to not take more. The other drugs make him very sleepy, so he's willing to put up with some discomfort and stay lucid.
Round 2
Blake checked in at 11 this morning. There was a bit of extra pokes getting the port tapped, which was painful and not much fun. Now he's getting 6 hours of IV fluids and will start the chemo at about 8pm. 24 hours after the chemo is done, they will watch his kidneys very carefully. When they're fine, he'll head home. They say usually 3 to 4 days.
We're all in good spirits. Please pray that the chemo works on the tumor!
With Mom
Waiting for chemo.
Another doctor visit
We met with Dr. Bedros yesterday and everything went well. Blake's oncologist continues to be so very patient and a great listener. He chatted with Blake for quite some time about his robotic competition and enjoyed hearing about the team's success.
In medical news, we found out that none of Blake's current pains are unusual or worrisome (his right foot hurts from doing all the walking, his scalp hurts a bit due to the hair follicles dying, his left foot hurts due to the location of the tumor). His pain has overall been minimal and he hasn't needed any of his pain meds. Blake's blood also showed normal levels for this point of his treatment.
We also found out that his next round of chemo will probably have less nausea. We knew that he was getting a different type of chemo, but it was good news to hear this second type is less intense. Apparently mouth sores are the more frequent side-effect with this second type (we know the medical names of these treatments, but I really think they're going to need some nicknames soon) so he will receive medication to help prevent that.
The upcoming schedule runs like this:
- Thursday, April 26th: Check into LomaLinda for chemo type #2. Hopefully go home after 3 or 4 days.
- Thursday, May 3rd: Repeat
- Thursday, May 10th: Repeat, but this time back to chemo type #1
Thanks for all your prayers! Our God gives generously and is the giver of all good things.