Back to School

Blake had 3 days of school last week. They went fine. Security is extra helpful. And they kind of need to be. The oncologist still wants Blake driven from class to class in a cart. And he's not allowed to lift heavy weights with his left arm and he uses his cane with his right arm, so he needs security to carry his backpack for the first 3 weeks. They have come through completely and been awesome. 

Blake is quite tired at the end of the day. His entire torso just feels kind of sore. He usually takes an afternoon nap. He's sticking pretty much to Tylenol, but is using a bit of his special "lollipops" in the evenings. His stamina should increase over the next month. 

He had his leg X-rayed on Friday and will see his orthopedic surgeon on Monday. We're getting good at looking at these scans. The bottom looks great and the cadaver bone and his bone have largely fused. EDIT! The top looking better. We can see some bone growth in the gap where fusion has been slow. We're curious to hear what the surgeon thinks. To our eyes, it looks encouraging.

Prayers for stamina, healing and strength appreciated.

 

All Clear!

The oncologist surprised us and called Jen's cell today. All the scans are clear. If you think about it, given that the lump in his lung was never gone, this is the first time he's truly had a clean scan. We're now on a 3-month scan schedule. 

Blake starts school on Wednesday morning, so this is truly blessed timing! 

Scan day

Today Blake will get thoroughly scanned. Full-body bone scan, chest CT and brain MRI. This can be a long exhausting process. Plus Jen bruised her foot last night, so she's hobbling along. Prayers appreciated. 

We'll probably see the oncologist next  Tuesday or Thursday with results. 

Blake starts school on Wednesday and is concerned about stamina and pain. It's probably not going to be very comfortable at first. Again, your prayers are appreciated. 

2 weeks

We saw Dr. Bedros today and heard what we pretty much expected. They will scan Blake in 2 weeks. Full-body bone scan, chest CT and brain MRI. The brain part is new. Apparently it is possible that if cells broke loose from the lung nodule, they might travel to Blake's brain.  Dr. Bedros was positive overall and was pleased that Dr. Mudge removed the entire lobe and that all other checked areas were clear.

If the scans are clear, we will resume the normal 3-month scan schedule.  

Blake's pain from the thoracotomy continues to decrease. He's far from pain-free, but his use of pain medication continues to decline. 

Prayer that we could get the scans before  school starts (August 14) appreciated. And obviously for clear scans. That pesky tumor was there for 14 months and didn't spread. Hopefully it doesn't spread now.

Out

On Friday afternoon, Devin shared the pathology news with us. He described it as "the best bad news". The lung nodule did turn out to be osteosarcoma. This is surprising for numerous reasons. Dr. Bedros had always said that if this nodule was the same cancer as the one in his bone, it would have dissolved away. But it clearly didn't.  

The good news is that the lump is OUT and it does not appear to have spread in any way. Devin decided to remove the entire lower lobe. The pathologist tested various parts of the lobe and it was examined for other lumps, all sent to USC. Everything else is clear. Devin also removed 5 surrounding lymph nodes. They are clear. 

When I talked to Dr. Bedros on the phone, he said "It sounds more like a little bump in the road than a big hole." He also said that it was very good news that the chest CT that was taken prior to surgery is clear (except for the one nodule). He didn't want to guess and make false promises, so he is getting the information and having his pathologist evaluate it all. We will meet with him in two weeks. 

So in short, we are uncertain what the future holds (are we ever certain?). We are hopeful that this is the end. We pray that this was the last bit of osteosarcoma and that all future scans will be clear. As always, we value your thoughts and prayers. 

 

Lollipops

Our time at St. Mary's was never boring. Here are some details. 

  • Blake's heart suffered some damage from one of his chemos. We've known about this for a while, but haven't had a lot of details. Blake saw his cardiologist right before surgery. Dr. Marais is an amazing, encouraging heart doctor. He is also Jen's cardiologist. He assured us that while his heart will need monitoring, it is going to be fine. It is odd to be in that office. There are people there my age... with their parents. 
  • After surgery Blake's heart was at a high rate (140 to 160) for many hours. Devin had a cardiologist named Dr. Ahmed consult. He put Blake on a beta-blocker. Apparently the type of high rate that Blake was on is not dangerous and is common after a procedure like this. Devin described his heart as "irritable". The cool news was that when they did an echo, his heart was actually better than it was before surgery. His ejection fraction was 25% to 40% pre-surgery, but was actually a normal 60% for Dr. Ahmed. We'll be curious to hear what Dr. Marais thinks of this. Blake will see him in a month.
  • Another part of the adventure was pain meds. Blake was itchy with his post-surgery drug, so Devin called in a pain specialist. She was a great problem solver. She used a fentanyl pump and steroids to help get Blake's pain under control. Turns out he has a codeine allergy. Now at home he is using fentanyl, except in a lollipop format! The nurses were all fascinated by this delivery method as they were not familiar with it. They look plain but taste ok. And they have done a great job at maintaining Blake's comfort.  
  • Blake's walking and strength continue to progress. We are so happy when we see him walking around the house with nothing to help him it all! He uses his cane most of the time, but even the stairs have not been a problem post-surgery. 

1.5

Blake now has no lower left lobe. Which is pretty much what Devin expected. Everything went smoothly. Prayers for a speedy recovery appreciated. We have to wait a few days for pathology on the lump.

A deep breath

Tomorrow (Tuesday, July 16th) is surgery day. Our good friend Devin Mudge will remove the lung nodule from Blake's lower, left lobe. He will probably have to remove about half the lobe. The nodule has grown from 9mm to 16mm, so it is definitely growing and it will great to get it out and know what it is.  We hope to have a pathology report by the end of the week.

Blake will be at St. Mary's in Apple Vally. For locals, the drive is about an hour. You go up the 15 and then take Highway 18 S for 3 miles. We will be staying (all 4 of us) up in Apple Valley for the week. Blake will be in ICU with an epidural for the first few days. Then transitioned to IV pain meds. We were very pleased to learn that all the rooms are private! When can tolerate the pain on just oral meds, we can go home. It will take about a week. Please call before driving up for a visit. There are just many things we don't know about how the recovery will progress. 

Blake saw his cardiologist again today. He does have some cardiac damage from one of the chemos (a common side effect) but Dr. Marais (who is amazing) said it is nothing to worry about. After the surgery he will put Blake on some cardiac meds. But he did observe improvement in the echo's from May to now, so that is great.  Dr. Marais also reassured us in a similar manner to what Devin has said--this loss of lung will have no noticeable affect on Blake in any way. We are basically built with a surplus of lung capacity.

Dr. Marais reminded us how awesome it is that Blake's surgeon tomorrow will be praying over him. We are so thankful for Devin in that regard especially. All of your prayers with us are appreciated so much. 

Finally, Blake made a new movie. Origami and stop-motion have now officially collided. I'm sure he would appreciate watching his view count grow tonight! 

More pics

Here are some more pictures from NYC. A nice gal named Deanna taught us a fun modular piece. And Blake participated in a 9 foot square folding competition.

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Trip

Well, Make a Wish is amazing. We had a fantastic trip to NYC and everyone had a great time.

The highlight of the trip was definitely Blake's attendance at the Origami USA Conference and his time with Robert Lang (pictured). Robert was incredibly kind. He spent 3 hours with Blake on Thursday afternoon. They folded together, Blake had his questions answered and they shared ideas. Later in the conference, Robert spent more time with Blake and gave him a personal lesson on wet folding. (you moisten your paper as you fold to make it more sculptable).

Jen stayed at the conference with Blake and they both took folding classes. The conference was relatively small and the participants were very friendly. There were many other famous names from the world of origami there, which added to the fun. Netflix streaming has an origami movie called "Between the Folds". If you've never watched it, take a look sometime! It's a great film. Most of the people in the movie were at the conference.

Victoria and Jacob and I also spent some time at the conference. And we explored NYC. We walked many miles! We saw the Museum of Natural History, Times Square, the Empire State Building, the Highline, Little Italy, Soho, China Town, FAO Schwartz, Grand Central Station, Chelsea Market, Museum of Math and more. Of course, we managed to dig up some epic NYC food locations and had quite a few tasty meals.

Many people extended extra kindness to us on our trip. Make a Wish was amazingly generous with our hotel (a very nice suite), a limo for the first day of the conference and lots of spending money for NYC expenses. The hotel by the Michigan airport comped us a second adjoining room that was handicapped accessible. And the hotel in NYC gave us a delicious chocolate cake and bag of goodies. The Origami USA folk were very kind and every time we turned around we were being given an extra t-shirt, pin or some other fun freebie. (Blake also left the conference with a ton of paper and books from the vendors at the conference. LOTS!)

Make a Wish's motto is to bring "hope, strength and joy" to children with life threatening illnesses. This trip certainly did just that!

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Make a Wish

Jen and the kids have had a great week in Michigan. I've graded AP exams for a week. Now we're all flying from Michigan to New York City for Blake's Make a Wish! Blake will get to meet Robert Lang at the Origami USA convention. We'll be there through Monday. More to follow.

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Two steps back

Surgery went fine and quick. We were at the hospital at 7am and home by 11am. That's faster than a doctor's visit! The incision is very small and it appears to have no stitches that will need to be removed--just glue. (and maybe some internal, dissolvable stitches, but we're not sure).

Blake's leg is now more painful to put weight on. He's back to two crutches and is a bit bummed about that. It seems that as his bone and cadaver bone compress together, it will take some time before he will be able to tolerate the same level of pressure that he had worked up to. However, we see increased strength every day. You can be praying that his strength comes back quickly and that his bones will fuse together. Once that happens, the surgeon assures us he will be able to be very normal in his activities.

Here are a few pictures of recent months, just for fun!

A loose screw

The orthopedic surgeon has been talking about this for a long time. It has finally come to pass. The surgeon wants to remove a screw from the work he did on Blake's leg. Here's the scoop.

The cadaver bone and Blake's bone are supposed to graft together. On the bottom, near the ankle, this has happened. The top has not. There are two screws at the top. They are designed so that one allows for some movement and the other stops all movement. The screw that stops all movement will be removed. The compression that will happen after this screw is removed will encourage grafting. Apparently this is not an unusual necessity. The procedure will be out-patient and will be on Wednesday. The incision will be small, and the location does not require much depth, so we hope that the pain management and recovery will be a few short days.

Blake has been going to physical therapy two or three times a week. He works with a variety of different therapists, some of whom put him through quite a work out. Blake has graduated to an elliptical machine and often comes home exhausted! He rarely uses both crutches anymore. He uses his cane (kindly and beautifully made by our neighbor Brian) around the house and on most outings. Sometimes around the house he doesn't use anything at all!

So the journey continues and we thank you for your prayers, as always.

Summer

Our summer plans have been buffeted back and forth by various factors. The most notable decision is the agreement that Blake will need a thoracotomy to remove the lump on his lung. This involves cracking open his ribs on the left side and removing a portion of his lung that contains the lump. The doctors are very unsure of what to make of this small nodule (currently 9mm). It has grown, but it has not spread to any other part of Blake's lungs. Our good friend, Devin Mudge, is going to perform the surgery. He is a cardio-thoracic surgeon and is very good at what he does. We are very pleased that Blake will be under that care of someone who give him special attention. Devin feels that the nodule is mostly likely benign. That is certainly what we are praying for.

We have been cleared to go on a family vacation before the surgery. Last summer, our kids did not get their annual trek to the beautiful Upper Peninsula of Michigan, so we're extra pleased that we get a vacation first. Here's the schedule:

  • June 10 Jared heads to KC to grade AP Stats exams for 9 days.
  • June 11 Jen and the kids head to Michigan.
  • June 18 Jared is done grading a couple thousand exams (whew!) and flies to Michigan.
  • June 19 the whole family flies to New York City for Blake's Make-a-Wish
  • June 25 (we think) we return to Michigan
  • July 9 return to Redlands
  • July 15 (probably) surgery

In NY, Blake will attend the Origami USA convention. He will be the guest of honor of Robert Lang (TED talk here). Robert Lang has written many books that Blake has studied. Many of the origami creations that Blake makes are Lang designs. Needless to say, Blake is quite excited about all this.

Blake's surgery will involve a one week hospital stay. Hopefully the lump is benign. Blake will be ready to start school on August 15.

We appreciate your continued prayers. God has been so good to us throughout this journey. We pray that this will be the final steps.

3 month scans

Today we met with Dr. Bedros to discuss the 3 month scan results. His bones have stayed clear and his lung has no new problems. So that is great.

But the lung nodule that has been there from the beginning is now a bit bigger. 9mm. History of the nodule is 4, 5, 6, 3 and now 9. The doctor does not know what it is. The chemo melts away most tumors, so he doesn't know why it has never disappeared. He said it could be scar tissue. But he wants it out.

So we'll talk to a thoracic surgeon soon and make a plan. We'll keep you posted. Thanks for your prayers.

Easter

Last Easter we had lunch in the hospital. Blake's first admittance was April 2nd. Today we will celebrate Easter and our risen Lord at church and at home with a healthy young man!

This update is long overdue. For those of you not on Facebook, you may have given up on this blog and I don't blame you!

Blake is doing great. He continues to get physical therapy twice a week and his walking grows stronger and stronger. Although he still needs at least one crutch. He recently finished a new video. He probably spent 200 hours working on it.

We spent three days and two nights at Disneyland. It was a glorious celebration and the whole family had a great time. When we were at the robotics championships a year ago, we promised that we would do this when Blake was healthy. That was a very exciting promise to see come to fruition.

Blake will resume school at Redlands High School tomorrow! He will have a five period day and is still on track to graduate. We are all a bit nervous about this big next step. Your prayers for his endurance would be appreciated.

Progress

Life moves on.  Blake's life outside of the hospital is better, but not yet the same as it was.  His port was removed on Monday. That was an exciting milestone.  Picture below. A lot of chemo ran through that small device.  Blake walked with no assistive devices on Sunday afternoon.  Just a few steps.  But it was a great moment. A picture of that moment is also below.

Stamina has been a roller coaster. Some days, lots of energy and he feels great. Other days not so much. So far he's managed to avoid the cold and flu bugs that are traveling through the populace and his siblings too. We pray that will continue.

School is still at home. It's difficult to know if he will be able to return to RHS this semester or not.

Physical therapy is ongoing.  Usually twice a week.  This keeps Jennifer very busy.

Now that his port is out, we can have a doctor take care of his in-grown toenails. Once that is done, he can stop taking his second to last medication. He will take a prophylactic antibiotic on the weekends until June. A total of four pills per week seems amazingly small. Our counter-top pharmacy shrinks and shrinks.

We plan to have a party and a celebration in the near future.  We'll keep you posted. We have so much to be thankful for and we would like to celebrate with you all.  We want to eat and laugh and thank God for his goodness.  

Please keep praying for clear scans! Next scan will be April.

Port

Port

Steps! (while making origami paper)

Steps! (while making origami paper)

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!