Thursday, April 30, 2009
Our home health physical therapist visited last night and instructed us both on proper technique for transitions -- from chair to wheelchair, from wheelchair to bed, etc. As long as he still has use of and strength in his right side, Steve is able to help a great deal. I'm there to help with the initial boost, to hold on tight and guide him to the right spot.
Steve slept fairly well last night and has been working from home all day.
Thanks for checking on sweet and amazing Steve!
Wednesday, April 29, 2009
We scrambled. Liz took Katie to school for me. I packed a bag and made other arrangements. Layne and Bob lifted Steve from the bed to the wheelchair and eventually to the minivan.
Once at the clinic, we required more help to get him out. A tiny but strong physical therapist gave Steve a great big hug and danced him over to the wheelchair.
We were a little late for the appointment, but we made it.
Dr. R evaluated Steve and determined that he is a good candidate for physical rehab. And then she told us that we'd need to go home and wait. Insurance still hadn't approved the admission.
I admit that I was overwhelmed at the thought of getting Steve safely back into the car and home and then forcing him to do it all over again. But we had no choice.
Before we left the building, we went to radiology for an X-ray of Steve's back. He's been having severe back pain, which we suspect is muscular after Monday's fall, but Dr. R wanted to be sure. We haven't heard back, so we assume he's not suffering from broken vertebrae.
The same physical therapist returned him to the car.
When we got home, Martin was waiting for us and moved Steve from the car to the wheelchair to his home office spot in the dining room. Liz arrived shortly after with lunch.
So now we're both working from home, waiting to hear that United HealthCare has agreed to cover inpatient rehab.
Dr. R said the stay could be a week or two. It will depend on what goals we set and how long it takes to reach them.
I'll update when we have the go-ahead to return to Zale!
Tuesday, April 28, 2009
He didn't fall, but there were some frightening moments in transit. I'm using all my strength to catch and hold him when he falters. Then he steadies himself and we keep moving with tiny baby steps.
We were able to get him from the bedroom to the dining room, where he worked from about 8:15 a.m. until 6 p.m.
As awful as the location of this tumor is -- and believe me, it's awful -- we still are incredibly thankful that he retains cognitive and reasoning ability. He's able to produce the most detailed Excel charts and tables and graphs I've ever seen.
But still, the tumor is in a terrible spot, and we can only assume at this point that it's the tumor that is causing his left-side decline. Even with the high dose of Decadron, he's losing ground daily.
Dr. M is concerned, of course, and has started the process to get him admitted for inpatient physical rehabilitation at Zale Lipshy (the UT-Southwestern hospital where Steve was unofficially diagnosed, back in December 2007).
The medical staff has accepted him. Now we're waiting on a bed pending insurance approval, which should come Wednesday or Thursday.
While a rehab patient, the staff will evaluate his current abilities and needs, and we'll set goals for discharge. He'll work with occupational and physical therapists and other caregivers as needed. I'll spend much of the day with him, too, to learn how to best care for him at home.
He'll stay overnight, which will be hard on all four of us, but we're all focused on the goal of Steve's safety at home.
Dr. M told me that she thought his stay would be for about a week. I expect we'll know more specifics after he's admitted and evaluated.
I explained to Cooper and Katie this afternoon why Steve will return to the hospital. There's a chance they'll come home from school tomorrow, and he'll already be at Zale.
When I was tucking Katie into bed tonight (the first of multiple tuck-ins), I reminded her about the upcoming hospital stay and asked if she had questions. In reply she told me that Daddy would feel a little better. And she said that they would take his tumor out. I reminded her that they can't take it out. She gently insisted that they should.
Today was another day that wouldn't have been possible without the help of many kind souls.
Betty stayed with Steve during the day while I attended a parent-teacher conference, conducted a client interview and had my own doctor's appointment (just a check-up). She also picked up Katie from school and helped Cooper after school.
Kerri brought a plate of sweet treats (with contribution from Kristie). Carol brought homemade chicken stock for Steve. Melissa delivered comfort food for dinner. Jeff came over to help me lift and move Steve. Sharon spent her free time tonight helping with the whole nighttime routine, even allowing me time to run with Liz and Melanie.
I'm always comforted by the help -- and by how Cooper and Katie respond. They have learned to be flexible and to accept help from others.
When Katie wakes up at 6:30 a.m. and is told she's going to the Smith house for the day, she doesn't balk or cry. She accepts and embraces the change in plans.
Cooper loves to listen to his Daddy read him bedtime stories, but if Steve's voice is too weak (like tonight), he's happy for me or one of our trusted helpers to read to him instead.
Especially in these most trying times, we are reminded of our infinite blessings. We are thankful for the joy that peeks and sometimes bursts through when we least expect it.
Monday, April 27, 2009
Steve fell in the bathroom around 5 a.m. (Waking to the sound of your one true love falling to the floor is one of the most horrifying sensations.) He hit his head and parts of his left side.
After I found no obvious signs of broken bones or cuts, we started working on a plan to get him up on his feet. Steve did his best to move his body around, but nothing was working. Our old strategy isn't compatible with the current weak state of his left side.
I googled "how to lift someone off the floor" and found a bunch of warnings -- don't attempt to do this at home unless you're trained. I found one that offered hope, but we soon realized his left side wouldn't support any weight.
So I called 911. The Frisco dispatcher is always calm and reassuring. A few minutes later, the fire truck and ambulance crews were at the front door.
Six guys crowded into our bathroom to assess the situation, take vitals and help. Even in his pain and discomfort Steve was joking a little.
They eventually got him on his feet and straight to his walker. Steve decided that he didn't want to be evaluated in an ER, so the EMTs left.
They were here about an hour. The trucks' lights flashed in front of our house the entire time. The guys moved in and out the front door with radio noise. Cooper and Katie never stirred once. In Katie's case, I think an angel must have kept her eyes and ears closed. She's our early riser, often beating the alarm clock.
We know we can't and shouldn't shelter them from every moment of this journey. But we're thankful to keep them sheltered so far from the image of emergency vehicles in front of our house.
Steve stayed in bed most of the day. He felt great pain in his back. Plus some of his kidney stone pain returned. With the help of pain meds, he took a much needed long nap.
In the meantime I visited with Dr. M's group on the phone plus our previous home health physical therapist.
The physical therapist is scheduled to evaluate Steve at home late tomorrow afternoon. He will help determine what Steve can safely do and teach me how to help him with transitions and movement.
Dr. M is working on some other solutions that we'll discuss more Tuesday.
By late afternoon, Steve was able to move from bed to the kitchen table. (We ate a delicious dinner delivered by Melinda, who read my Facebook/Twitter update early this morning and, like so many of you, offered help right away.)
He's back in bed now, definitely feeling some discomfort from the day but in good spirits considering what he's endured in just the last two days. (An exciting episode of 24 always helps.)
My own spirits were lifted by treats from Liz, Kris and Holly and notes and calls throughout the day from other sweet friends.
And someone special left a giant basket of arts and crafts activities on the front steps, discovered when Cooper came home from school. I just wish I'd had my camera handy to capture their joy.
Nothing could beat the joy that Steve and I felt at the dinner table tonight, though.
Steve asked Cooper what his favorite part of the day was. He answered, "Getting to see you after school, Daddy."
And then Cooper held our hands as he said our mealtime prayer:
Sunday, April 26, 2009
- Steve had kidney stone-related trouble throughout the night.
- The pain was terrible -- up to an eight on a 10-point scale.
- His symptoms required an early morning visit to the emergency room.
- A CT scan this morning showed a 3-mm stone sitting on top of his bladder.
- The same scan showed that his right kidney is now free of stones. (A tiny 1-mm stone is hanging out in his left kidney. We pray that one stays put for a long time.)
- The pain meds worked quickly in the ER.
- He didn't need to be catheterized. (Being catheterized is in Steve's Top 10 List of Things He Dreads.)
- This was the shortest ER visit in the history of Damm ER visits. We were in around 6:45 a.m. and out by 8:45 a.m. I think it helped that (a) Dr. M called ahead for us; (b) we knew what the problem was; (c) the triage nurse was efficient; and (d) the Plano Presby ER was the least crowded we've ever seen.
- He can continue pain meds at home -- probably for the next 12 to 24 hours, until the stone is gone.
- Katie scored a morning with the Smith family, and Cooper gets to hang out with the Starnes family for a few hours.
Saturday, April 25, 2009
He's still battling headaches daily. His left side is still trouble. We'd sure be appreciative if those symptoms would lessen with the higher steroid dose. I'm guessing he'll move up to 12 mg soon -- three times the dose he was taking just 10 days ago. The goal is to find a level high enough to make a difference but not so high that the effects are worse than necessary.
After looking at the calendar for next week, Steve has decided to stay home all weekend. He is going to the office Monday and Tuesday -- a huge step and energy-zapper for him -- and to the cancer center Wednesday for routine lab work.
The kids are having a big weekend. Cooper and Uncle Jim are part of Cub World this weekend, camping out with the rest of Pack 443 overnight.
And Cooper's school hosted a carnival today. Half of the proceeds from the dunking booth are designated for our family, to help with medical expenses. Isn't that so thoughtful and generous? Doesn't it make you feel warm and happy to know that we all are surrounded by such goodness?
Wednesday, April 22, 2009
The race starts at Winfrey Point, on the east side of White Rock Lake. Let's meet at 7:30 a.m. in front of the house on the top of the hill (it's easy to find). It's never too late to register online, or you can even register the morning of the race. If you'd like to register online, click here.
Running not your thing? You can still show your support by lining the course and cheering on Steve's team! I have some signs already made but you're more than welcome to make your own. The team colors are yellow and blue.
Let's get out there and show Steve and Tyra just how much we care about them!
Out Damm Spot!
Steve slept through most of the treatment, barely noticing when the nurse came in the room to change the drugs. I was able to meet a writing deadline and get caught up on other work.
We're bracing for Steve to feel lowly for the next couple of days, based on past experience with Carboplatin. Maybe this beautiful week of warm sunshine will help combat just a bit of exhaustion.
We also discussed his steroid dose. He hasn't seen improvement at 8 mg, so today he'll increase the dose to 10 mg.
She's not sure if he can receive chemotherapy today. She's tracking down Dr. M for advice and will call back -- hopefully before noon, when we're supposed to leave to make it to the appointment on time!
We are constantly reminded of the importance of patience and flexibility. Today is just another example.
Monday, April 20, 2009
His kidney stone pain has subsided as well. Last night was the worst. Even with lots of pain pills, his pain was 8 or 9 on a 10-point scale. If it had persisted any longer, we would have been visiting the emergency room for more powerful drugs.
His headaches continue. As we give thanks for rising platelets and no kidney stone pain, we pray for relief from his headaches.
Sunday, April 19, 2009
With Aunt Ami in town, it was time for a hair cut.
He didn't mean to alarm sweet neighbor Drew.
He wanted to make Katie happy.
(Before the big event, Steve told Cooper and Katie
Katie bounced around at Conor's fifth birthday party.
Cooper played tough with the Dolphins, the hardest-working second-grade soccer team in Frisco.
In health news:
Steve seems to be passing another kidney stone. He's been taking pain medicine, which is helping some, though right now he's in awful pain. (I know there's no point in deciding "what's fair," because nothing about Steve's condition is fair, but honestly. He shouldn't have to endure so much kidney stone pain on top of everything else.)
His headaches aren't improved yet with the increased steroid dose, but it's still early in the process.
And Steve has a new hairdo! Check back soon to see!
Friday, April 17, 2009
In the past few days, though, his symptoms have gotten worse. His headaches are almost constant. Yesterday he needed hydrocodone for the second time in a week -- the pain isn't always relieved by Tylenol. Also, his left side seems even less responsive than normal.
When we met with Dr. M's nurse early this afternoon, we shared our concerns. And I asked for an MRI earlier than May 14, his next scheduled scan. The team responded quickly and arranged for a scan at 2:45 p.m.
(His lungs sound clear!)
Before we headed to the imaging center (part of the same building as Dr. M's office), we visited with Dr. M for about an hour. She is such a supportive doctor, concerned about Steve's emotional health as well as physical.
We talked at length about Steve's fears, how Cooper and Katie are handling life with cancer, how this whole process just wears you out but how it also offers clarity about life's purpose.
We talked about treating every single moment as precious -- especially with the children.
(The conversation reminded me of a Jacqueline Kennedy quote I recently discovered: "If you bungle raising your children, I don't think whatever else you do well matters very much.")
She emphasized that Steve is an amazing father, husband and overall person. That his attitude and sense of humor have carried him this far.
After our visit, I grabbed sandwiches from a campus cafeteria, and we headed to the imaging center. And waited.
Steve's last MRI was March 20. Today is April 17. MRIs are allowed by insurance every 30 days.
So, the staff scrambled to get our insurance company to approve the scan. That process took more than two hours, so Steve waited until 4:45 p.m. for the MRI.
On our drive home, Dr. M called with results.
The image shows that the Damm Spot is slightly plumper all around, the cause of his increased symptoms. Dr. M's believes that this is swelling, not new tumor growth.
To address the problem, Steve will increase his steroid dose to 8 mg, up from 4 mg. Dr. M expects that this will help his symptoms. If it doesn't, she may increase it again to 12 mg.
The blood work shows that his platelets are a little low -- 93,000. We'll return Monday for another blood draw. If the counts drop more, the next dose of chemotherapy and Avastin will be delayed. If the numbers are stable or a little higher, he'll most likely receive the medicine on Wednesday.
1. Steve's lungs are clear, indicating his pneumonia is resolved.
2. His platelets are a little low and need to climb for chemotherapy and Avastin next week.
3. The tumor is a little plumper all around, compared to March 20. The theoretical cause is inflammation, which will be treated with a double dose of Decadron.
We give thanks for quick and compassionate response from Steve's medical team, for a scan that doesn't look too bad, for the hope that steroids will improve his symptoms, for a group of family and friends that continues to support us in every possible way, for unceasing prayer.
Wednesday, April 15, 2009
His breathing sounds normal; his shortness of breath is gone.
He's still extremely fatigued, but that seems normal after pneumonia, even for otherwise healthy patients.
Steve has been working from home daily. This week he moved the home office into the dining room. With his non-responsive left side, he's having difficulty rising from the family room sofa -- it's just too low to the ground.
We are concerned about his headaches, which have returned with great frequency. He needs Tylenol every day now to control the pain. Only once this week has he needed pain medicine stronger than acetaminophen.
We'll address the headaches on Friday, when we visit with Dr. M at the cancer center. Steve will have blood drawn, and then we'll meet with Dr. M to review the results and get Avastin and chemotherapy back on track.
Please pray for relief from the headaches and for healthy counts on Friday. We don't want to give the Damm Spot any more free time!
Sunday, April 12, 2009
Friday, April 10, 2009
Steve was unable to talk -- he could barely even whisper. His headaches have returned. He was barely able to walk, even with Walker Texas Ranger. We guess that his body is just worn out and recovery from pneumonia is going to take some time.
Of course, recovery at home is much better than in the hospital. Steve has been treated to all kinds of Cooper and Katie entertainment. After dinner last night, Katie performed a dance "to help Daddy feel better," then Cooper joined in with a sort of vaudeville act, featuring an Indiana Jones hat, hobby horse and Webkinz monkey.
Thank you for continued prayers!
Wednesday, April 8, 2009
Steve enjoyed the spring air as he waited in a wheelchair for me to bring the car to the hospital's front entrance. He hadn't breathed fresh air since late Friday.
This bout of pneumonia has delayed Steve's next dose of Avastin. He had been scheduled to receive it today.
Next Friday, April 17, he has an appointment with Dr. M. She will evaluate him then and determine when he can best handle another infusion.
Katie is spending the afternoon with her sweet preschool teacher, Mrs. Lilly, and Cooper is playing with buddy Asher. We'll all be reunited early this evening -- can't wait!
There's nothing he's receiving here that he can't get at home. His drugs are all by mouth. We have an oxygen machine at home.
Of course, there are all kinds of comforts and joy that home provides -- family, dog, familiar surroundings, sleeping through the night without vital checks and blood draws.
I am still concerned about Steve's shortness of breath. The attending doctor said that probably won't resolve for weeks. He needs time to recover.
We don't know an exact departure time -- just sometime this afternoon.
Steve was scheduled to receive Avastin at the cancer center today. That appointment has been canceled and will most likely be rescheduled for next week. I spoke with Dr. M's nurse, who said Thursday or Friday of this week would be too soon to add a biological agent to all that's going on in his body right now.
I'll post again when we're home!
Tuesday, April 7, 2009
His shortness of breath is much resolved. The increased oxygen seemed to help; now he's down to 4 liters, with the hope of continually weaning to lower numbers.
Yesterday's X-ray shows the same pneumonia activity as late Friday night, which is good news. There is no indication of new or spreading infection. Some of what shows up on the X-ray image now may be clusters of white blood cells that rushed in to the rescue.
(Steve's attending doctor told us that to fight pneumonia, your body relies on antibiotics for 10% of ammunition and your own immune system for the rest. That explains why the old and young and immune-compromised are most at risk of complications.)
The X-ray also showed some atelectasis -- collapsed air pockets in the lungs. (He's had this before.) This can happen when a patient is sedentary and/or doesn't take enough deep breaths. It can also explain some of his shortness of breath.
With that news, he started using an incentive spirometer for deep breathing exercises. And a physical therapist visited this afternoon to evaluate his ability to walk (with the walker). They walked from the room to the nurses' station and back -- his longest walk since Friday at home.
Steve received his last dose of IV antibiotics sometime last night and is now taking oral Levaquin.
If his breathing stays in control and he doesn't spike a fever while on the oral Levaquin, he'll probably be released sometime Wednesday. Of course, we're flexible and understanding if that's delayed another day. (Dealing with a serious long-term illness tests and refines all kinds of character traits -- including flexibility and patience.)
Today was logistically possible thanks to Betty, Jim, Beth B., Celeste W., Sharon G., Dawn L., Kelly S. and Liz S. Thank you!
And thank you all for continued prayers and support.
Monday, April 6, 2009
- Betty is spending the night with Steve at St. Paul, allowing me to spend the night at home with Cooper and Katie. Our home bed feels so good after three nights on a Murphy bed cot.
- Steve's shortness of breath returned this afternoon. A nurse just evaluated him tonight and increased his oxygen flow from 2 liters to 5 liters. That pushed his blood-oxygen level up from the high 80s to the mid-90s.
- The same nurse has requested breathing treatments, and now Steve is waiting on a doctor to stop by to examine him and put in orders for respiratory therapy.
- We didn't learn results of the chest X-ray today. We should get those Tuesday morning.
- He is still on IV antibiotics, which leads us to believe he'll be at St. Paul until at least Wednesday. If they start oral antibiotics tomorrow, he'll still need 24 hours of hospital observation before he can come home. (At least that's what we and Dr. M's team are comfortable with.)
- Thanks to Layne, Nita, Holly, Kris, Liz, Aimee, Jim and Betty for help today!
Steve hasn't yet had chest X-rays. They need two views, so the scan can't be done in the room. He'll be transported sometime today to radiology.
The resident still thinks Steve is on track to leave tomorrow, assuming the transition to oral antibiotics goes well. As eager as Steve and I are to get home, we also want to be cautious and make sure he's strong enough and well enough to be home.
When Steve was admitted early Saturday morning, his patient care tech was Joan. She's worked the past three 7 p.m.-7 a.m. shifts and has taken excellent care of Steve.
He was thanking her this morning for her compassionate care.
She answered: "Oh, honey, you're the kind of sweet man I just want to bottle up and use as perfume."
Sunday, April 5, 2009
Saturday, April 4, 2009
After five hours in the waiting room and an ER exam room, we arrived in Room 308 at St. Paul. This is a new wing for us, and it's the nicest of the St. Paul rooms Steve has been assigned. The walls have new paint, the floors are wood, and there is much more space. It's remarkable how cheerful surroundings improve your mood and outlook.
The chest X-ray showed about a golf-ball-sized conglomeration of probable pneumonia activity. The many test results are still out, so the medical team is attacking the infection with three high-powered IV antibiotics. The hope is that one of them will knock out all that bacteria.
Steve feels better today than yesterday, despite getting by on very little sleep. (We finally fell asleep a little before 5 a.m., and then two residents came in for an exam. We slept a little more before the morning shift started their business.)
The attending pulmonologist expects that, based on Steve's slight improvement in a short time, we'll be able to take care of the pneumonia with two weeks of antibiotics. Most of that treatment should be at home. He'll be here until at least Monday, when they'll take another scan of his chest and determine how well he's recovered.
Loyal readers know how much Steve dreads hospital visits. He misses life at home -- Cooper and Katie, fuzzy Margie, reading bedtime stories, working. He's definitely not a lay-about-and-do-nothing kind of guy.
With that in mind, as you pray for speedy and full recovery from pneumonia, please also consider praying for Steve's continued courage and endurance.
We spent about five hours in the ER. Steve is beyond exhausted. The night nurse is getting him all settled in, and we hope to sleep soon.
Jim and Betty are at our house with Cooper, Katie and Margie. (We left for the hospital after the kids were asleep -- Steve's temperature was high even with Tylenol.)
Julie followed us here and helped for a couple of hours. Then Mary MT arrived with some snacks for Steve and stayed with us until we moved upstairs.
He has had a chest X-ray, and we're waiting on results and further instruction.
It's crowded here. We are seated in an alternate waiting room to avoid germs, and Steve is wearing a mask for additional protection.
More updates as we get them ...
Thursday, April 2, 2009
He's worked from home all day and is on the verge of a well deserved nap. As Steve would say, we won't go out for high-energy dancing tonight.
We just received via e-mail lab results from yesterday. There are some values out of range, but nothing is at an alert level. Steve and his body continue to fight and stay strong, and we are incredibly thankful, even on these more difficult days.
The bone marrow donor drive for Karen Mellow Stock last weekend brought in more than 800 possible donors! We continue to pray that her perfect match is discovered soon.
Please add to your prayers Connor Cruse, a fellow Frisco resident who has been battling cancer for four years. This sweet 8-year-old boy has already endured so much -- so cheerfully, so faithfully. His family has just learned that his tumor is still growing despite his current clinical trial.
One of my current favorite quotes, from C.S. Lewis:
"You don't have a soul. You are a Soul. You have a body."
Wednesday, April 1, 2009
Steve did experience extreme fatigue after Thursday's chemotherapy. Most of that has resolved now, and his stability is back to "normal," meaning he's about where he was before he received chemo on Thursday afternoon.
He has had no falls. Woo hoo! Actually, there are no new symptoms to report -- just the same ol' favorites that we've come to expect.
After we take Cooper to school and Katie to preschool in the morning, we'll return to the cancer center for lab draws. I'll report back Wednesday afternoon if there are any concerns.
In the meantime, let's all enjoy this lull in Damm Spot breaking news!