A Happy Holiday and Planning for Surgery

We had a happy, noisy, busy Christmas with all the family at Steve and Terry's new house. We had 21 people and 8 dogs and all fit nicely as the new house is much larger than the old. Steve seemed to feel good most of the day, but did need a short time-out mid-day which was unusual for him and I blame on the tumor. Everyone contributed to a fabulous meal and there was much generosity and excess in the kitchen and under the Christmas tree. Santa brought Steve all kinds of healthy things, like hand weights, an exercise mat and a treadmill. Steve continues to eat healthily. His headaches are minimal now, only requiring Tylenol occasionally. He only has sporadic problems finding words which might be not be noticeable to most people. 

Terry was on the phone most of today making arrangements for the tumor to be removed and coordinating with the insurance company.  January 3rd is now scheduled for tests all day. Starting at 8:15 Steve will have a functional MRI in the morning and at mid-afternoon is a targeted MRI. Apparently, the functional MRI helps to locate the vital speech and motor areas of the brain, specific to Steve, as there is variation among different people. This allows the surgeon to avoid those extremely important areas. The targeted MRI involves light saber electrodes attached to Steve's head and helps to identify the specific location of the tumor to be removed. Steve and Terry will also meet with the surgical nurse and anesthesiologist. Surgery itself is scheduled for 8:00 am January 4th at Cedars-Sinai Hospital in LA. Chiraq Patil will be the neurosurgeon. I don't know how long surgery is expected to take, but I'm sure it will be many hours. I will be unable to be with Steve and Terry that day, but our sister, Lesley has agreed to update this blog. I will be anxiously awaiting her updates. I hope the internet access at Cedars-Sinai is better than it was at Kaiser so we can receive frequent information. 

BEST WISHES STEVE!!

Christmas Dinner 2011

A Good Day

After much anticipation, today was appointment day with Dr. Pikul of Kaiser. We had heard good things about his surgery skills from Cedars-Sinai and that he was the Go-To guy for brain mapping and a UCLA referral.  Steve had a repeat MRI done Tuesday and we were anxious to hear how it compared to the older MRIs.

Terry called me at lunch time and was very happy. They were very pleased with how informative and nice Dr. Pikul was and, better yet, he told them the MRI showed no progression of the tumor or edematous area (black area of swelling) from the November 21st MRI and therefore, surgery did not need to be rushed. Steve was stable for now and they had time to decide details of what they wanted to do.  The first date available for a non-emergency surgery was the first week in January through Kaiser.

BUT, Steve and Terry are changing their insurance coverage effective January 1st away from Kaiser and into an Aetna plan which allows them to go to their facility of choice.  They discussed their options and have decided to go with Cedars-Sinai. They felt better with the Cedars facility than with the UCLA facility after their appointments yesterday so they have booked Steve to have brain surgery with a Dr. Patel at Cedars on January 3. Terry has already been on the phone working on the pre-authorization for the surgery so they will be ready to go on the first available day. Cedars-Sinai offers the clinical trial with the tumor vaccine which they will try to participate in (his tumor has to have the right make up).  I'm not sure when the functional MRI will be done, but Terry is working on it.

Steve and Terry feel relief. There is time for Christmas and a temporary reprieve from constant appointments and worries. Surgery is scheduled and treatment will happen.

They were decking the halls with boughs of garland and lights. The stockings were hung by their new chimney and they were merry making tonight. All of the families will descend upon them for the holidays and we will be loud and cluttered for several days.

Big Appointment Day

Today, Steve had appointments at Cedars-Sinai hospital and UCLA oncology departments. Terry, Chrissy  and Greg kept him company. At lunch time Lesley telephoned to tell me Chrissy sent her a text saying it went really well at Cedar-Sinai. The UCLA appointment was later that afternoon. 

When I got home, I called Greg and asked him about the appointments. In between cell phones breaking up, this is what I got:

They met with someone at Cedars-Sinai who seemed very knowledgeable. He reiterated that Steve's tumor should be removed and that it was in a pretty good location so surgery would not likely cause any permanent damage to vital areas. They tested Steve's vision, memory and language and found no impairments (YAY, I'm so happy.... I haven't seen Steve lately and I was worried). Cedars-Sinai also runs a vaccine program similar to UCLA's. They recommend the whole gamut of treatment we have been reading about. Surgery, radiation and chemotherapy.

Greg was not too thrilled with the UCLA appointment because they were expecting to meet with the head of the department, someone named Dr. Cloughesy, but instead they met with a "gal" (Greg's word) from the oncology department who didn't know about the surgery options or clinical trials in other departments. She also tested Steve for deficits and Steve did well. She said her department was running a clinical trial with a drug called Belcade which has had some success. Apparently, it inhibits protein synthesis, thus slowing tumor growth and it also seems to make the tumor more sensitive to radiation. They have someone who had been given the Belcade who has been alive over ten years now.  Ten years is a lot longer than the standard 12-14 months.

Did I write about the vaccine trials in a previous blog? I don't remember. We had heard about this vaccine program which is a clinical trial at UCLA. They take the tumor out and take it off to the lab. They try to make a vaccine based on your own tumor which would then be injected to trigger your own immune system to fight your tumor. Pretty ingenious, don't you think? They heard today that only 50-60% of tumors have the genetic capability of being made into vaccines, so some people can't participate. You don't know until you try, though, right? The folks at Cedars-Sinai, City of Hope and UCLA are all moving forward or recommending the vaccine trial as a possibility. The only negative comment we heard came from Dr. Greene at Kaiser yesterday who said he didn't think the trials were going well and he seemed to be anti-vaccine program.

More good news.... I asked Greg how Steve was doing and Greg said word-finding problems were not noticeable and Steve's headaches were better. He only occasionally needed to take Tylenol for them now.  Woohoo! And since Steve seemed to be stable (likely from the dexamethasone steroid medication) they didn't have to rush into surgery. I take that to mean it's possible to wait until the New Year for surgery when the new insurance starts up (good-bye Kaiser!).

We are all looking forward to Dr. Pikul's appointment tomorrow at Kaiser. Steve had a MRI taken last night in anticipation of the appointment. We want to hear about any changes in size of the tumor and areas of swelling and what Kaiser plans to do to help Steve.

Not too bad a day, I think. We've had worse :)

Another Day of Nothing at Kaiser

The big appointment with Dr. Greene, upon whom we were hoping to move forward and get surgery scheduled and/or a referral to UCLA, was a bust. Lesley and Greg both missed a day of work to accompany Steve and Terry for this appointment. I talked to both Terry and Lesley on the phone afterwards and they agreed that it was a waste of many hours.

First, an assistant was doing some preliminary intake information, got psychotic and over-emotional and ran out of the room. The manager apologized. Then they waited a long time for the doctor. When they asked him about a referral to UCLA he said he couldn't do it because it has to be the neurosurgeon, Dr. Pikel to do it. They have had an appointment with Dr. Pikel this Thursday for a while.

Terry called the Office of the Patient Advocate but they couldn't do anything unless Kaiser denied treatment. Another dead end.

That is all.

Kaiser

Steve and Terry have had Kaiser for their health insurance for probably twenty years. They have been happy with it since it provided good wellness care, vaccinations and routine office visits. They had both babies born at Kaiser hospitals and Nathan had his appendix out with great results.

I have worked in the healthcare profession for thirty years. I know Kaiser's philosophy is to save costs by managing care. I have seen mostly good care, but not always, and patient's manage to improve with fewer therapy services than other providers offer, shorter hospital stays and faster discharges home with family members providing the burden of nursing care. I think it is great insurance for younger, healthy people. It even works for ill people who don't mind fighting for their care.

I think it is safe to say that anyone reading this can discern that I have been very dissatisfied with the care Steve has received. Steve's condition is time sensitive and Kaiser in Southern California has not been speedy at all. I work with multiple case managers in the Northern California system, which is a separate system from the southern one. The managers I have discussed Steve's case with have told me that they would have been much speedier, including weekend tests, scans and surgeries and that they have provided such care here. I get so frustrated with Steve's Kaiser. Steve had appointments the Monday and Tuesday before Thanksgiving and the Monday, Tuesday and Wednesday after it, but isn't it funny how he had nothing over the long weekend, nor ANY weekend?

A few days ago, I asked Terry to contact the Office of the Patient Advocate from the California Department of Managed Care. She reached them too late on a Friday afternoon to begin a review of Steve's case and they suggested Terry complete their forms for Monday morning review. Terry promised to complete them. I believe Kaiser will behave with more consideration if they know an outside agency is going to be watching them.

On a brighter note, since Steve hasn't had any appointments since his biopsy a week and a half ago, he has spent more time with his family. They put up their Christmas tree in their new house and wrapped their gifts. He continues to take walks, sometimes with Nathan and always with their dog. He eats smaller portions of his healthier food. He has gotten bored even, since he is not working. His word finding problems have not worsened and it doesn't cause too much trouble, I hear. His headaches are usually tolerable and he tries not to take the codeine pills because of the constipating side effect. I understand Steve has been shorter tempered than usual and Adam has started to call Steve's tumor "Mr. Steamie". Isn't that cute? I also liked about two weeks ago when Adam curled up next to his Dad and asked, "How's your cancer today, Dad?" You've gotta love kids :)

Today he had his stitches taken out from the left side of his head. He can shampoo again, whoppee!

Tomorrow he is scheduled with a Dr. Greene from Kaiser. Greg drove back down to attend that appointment and to also be at the Wednesday appointments with Cedars-Sinai and UCLA hospitals. Way to go, Greg. I wish I could be there, too.

About Glioblastoma

So what is a glioblastoma? Most of us aren't familiar with it and don't have it stuck in our brains, unlike Steve. We have been searching the internet and asking questions since November 18th when a spot was found on Steve's CT scan. Here is some of what we have discovered:

Glioblastomas are also called glioblastoma multiforme or GBM or anaplastic (which means malignant) astrocytomas grade IV. In Steve's case there is no known cause and it is not hereditary (there are some rare exceptions which do not apply to Steve).  More men are affected than women, usually ages 45-55. Only 1% of the population gets malignant brain tumors.  High exposure to ionizing radiation increases the risk, but we don't believe Steve had much exposure. Research about cell phones has been been looking at a link with a different type of tumor (schwannoma), and the phones don't give off ionizing radiation.

Symptoms vary depending on the location of the tumors and usually include headaches, nausea and vomiting and drowsiness. Personality changes are expected. Steve's tumor is near the language center of the brain in the left temporal lobe but the swelling has spread into all the spaces on the left side and has pushed the brain over to the right so that the center line of the brain has shifted.

From the American Cancer Society:
tumors of the central nervous system (CNS) differ in some important ways from cancers in other parts of the body. The most deadly aspect of other cancers is their ability to spread throughout the body. Tumors starting in the brain or spinal cord can spread to other parts of the CNS, but they almost never spread to other organs. The most dangerous aspect of these tumors is that they can interfere with essential functions of the brain.  
In most cases, the first step in brain tumor treatment is for the neurosurgeon to remove as much of the tumor as is safe without affecting normal brain function. Tumors that tend to spread diffusely into nearby brain tissue such as anaplastic astrocytomas or glioblastomas are not cured by surgery. But surgery can reduce the amount of tumor that needs to be treated by radiation or chemotherapy, which can help these treatments work better. This may help prolong life even if all of the tumor can't be removed.


Did you know there is an American Brain Tumor Association? Who would have thought? They have a great, informative website. Some things from them: 
Generally, the first step in the treatment of these tumors is surgery. With today’s modern techniques,

surgery is generally safe for most patients. The goals of surgery are to obtain tumor tissue for diagnosis and treatment planning; to remove as much tumor as possible; and to reduce the symptoms

caused by the presence of the tumor.

A snippet from the UCLA glioblastoma site:



From Wikipedia:

World Health Organization (WHO) grading system is commonly used for astrocytoma. Established in 1993 in an effort to eliminate confusion regarding diagnoses, the WHO system established a four-tiered histologic grading guideline for astrocytomas that assigns a grade from 1 to 4, with 1 being the least aggressive and 4 being the most aggressive.

Glioblastoma multiforme is the deadliest and most common form of malignant brain tumor. Even when aggressive multimodality therapy consisting of radiotherapy, chemotherapy, and surgical excision is used, median survival is only 12–17 months. Standard therapy for glioblastoma multiforme consists of maximal surgical resection of the tumor, followed by radiotherapy between two and four weeks after the surgical procedure to remove the cancer. This is followed by chemotherapy. Most patients with glioblastoma take a corticosteroid, typically dexamethasone, during their illness to palliate symptoms.

Surgery is the first stage of treatment of glioblastoma. An average GBM tumor contains 10¹¹ cells, which is on average reduced to 10⁹ cells after surgery (a reduction of 99%). It is used to take a section for a pathological diagnosis, to remove some of the symptoms of a large mass pressing against the brain, to remove disease before secondary resistance to radiotherapy and chemotherapy, and to prolong survival.

The greater the extent of tumor removal, the better. Removal of 98% or more of the tumor has been associated with a significantly longer healthier time than if less than 98% of the tumor is removed.^[27] The chances of near-complete initial removal of the tumor can be greatly increased if the surgery is guided by a fluorescent dye known as 5-aminolevulinic acid.^[28] GBM cells are widely infiltrative through the brain at diagnosis, and so despite a "total resection" of all obvious tumor, most people with GBM later develop recurrent tumors either near the original site or at more distant "satellite lesions" within the brain. Other modalities, including radiation, are used after surgery in an effort to suppress and slow recurrent disease.

The median survival time from the time of diagnosis without any treatment is 3 months, but with treatment survival of 1–2 years is common. Increasing age (> 60 years of age) carries a worse prognostic risk. Death is usually due to cerebral edema or increased intracranial pressure.^[50]

I copied the parts I found most relevant for Steve and did you notice the repeated reference to removing the tumor? Did you see the part about only living 3 months without treatment as the median? That means half don't even make it 3 months! About dying from swelling (edema) and pressure? How can that feel? While gradually losing your ability to manage anything because your brain is dying in pieces EVERY DAY. 

We have known about Steve's tumor since November 18th, for 3 1/2 weeks. The only treatment he has had was to start the dexamethasone about November 30 to control swelling before the biopsy and  Dr. Sanchez had him diminish the dose after surgery. Is it effective? I know he is still having headaches. He hasn't had any follow up scans since the biopsy so what size is the tumor and surrounding area of swelling?

City of Hope Report

Greg had arranged for the City of Hope to review Steve's records at their scheduled tumor board meeting on Friday, December 9.  Here is what he e-mailed Terry with a copy to me:

City of Hope had their Tumor Board meeting a day early and I received a call this evening. Here is the information.

1)      The rate of growth of the rumor is concerning. They want you to get a new MRI ASAP to verify the growth rate.

2)      The tumor is in a position to be operable and they recommend to resect (remove) the tumor quickly (but see #7 below)

3)      CoH upcoming research program will be too late starting for Steve to participate – he needs to start treatment quickly.

4)      CoH treatment plan is surgery followed by radiation + chemo. Survival rates given were typical of the articles we have been reading, with a wide variation based on their actual patients: 3 years to “still going strong”.

5)      CoH only takes Aetna PPO, not HMO option.

6)      CoH does not seem to offer anything of special benefit for Steve.

7)      They do recommend UCLA’s “newly diagnosed vaccine research program”.

a.       They say that Kaiser has a contract with UCLA for this research program and can put Steve in the program

b.      Dr. Greene is the coordinator between Kaiser and UCLA (according to CoH).

c.       If this is the case, he cannot get surgery except from a UCLA research surgeon

                                                               i.      Because a vaccine is individually made from the removed tumor

d.      When CoH research program gets started early next year, they will be working on the same vaccine approach.

Looks like the appointment with Dr. Greene next week becomes the priority discussion. Can we call Kaiser to verify their relationship with the UCLA research program?

 Many thanks to Greg for working on this. It seems that getting Steve in to UCLA is the next  step. Greg already has Steve scheduled for a consultation next Wednesday  on a private pay basis (I believe it is $700). My question is why hasn't Kaiser initiated this? Terry asked for a second opinion  with City of Hope or UCLA the evening of the biopsy on December 2nd and Dr. Sanchez said he would have to check with his boss to refer out of Kaiser. I saw a  Kaiser reference on the UCLA website so I'm sure there is an affiliation somehow. Why has nothing happened? Do you feel the urgency in the wording from the e-mail above? Days matter.

Big Brother and Pathology Report

Greg is our big brother. Like many eldest children, he is very assertive and capable and smart and we think he's better than most. Steve has been leaning on Greg to help him through this obstacle course, especially when Steve was having headaches and losing his language skills he asked Greg to help him out.

Greg has been making phone calls and now has second opinions scheduled at UCLA and City of Hope. Greg has found names of people to help or are specially skilled, like a surgeon at Kaiser who has a reputation for good brain surgery. Terry has now made an appointment with him, Dr. Pikul.

Terry e-mailed the pathology report to us. FINAL PATHOLOGIC DIAGNOSIS
A AND B. BRAIN, BIOPSY, LEFT TEMPORAL: GLIOBLASTOMA (WHO GRADE IV) WITH FOCAL SMALL CELL COMPONENT. There it is in writing. Glioblastoma. Yuck to you, glioblastoma!

I talked to Steve this afternoon. He's feeling pretty good with minimal headaches and a not too upset stomach. He says he was devastated by last night's news about the tumor being grade four and couldn't sleep last night. He was trying to be more optimistic today. He said he walked the dog and ate healthy food. He was e-mailing work to see if he could work some half days and not mess up his disability or insurance status. He was planning to go to Nathan's concert tonight. Nathan will be wearing a tuxedo for choir at the Holiday show. I bet he'll look really sharp. I'm looking forward to photos of it. Steve didn't seem to have any word finding difficulties while we talked. Maybe that symptom will be mostly gone  now. I sure hope so.

There are no appointments scheduled for Steve this week. City of Hope will review his case via his records on Friday. How can he have days and weeks with nothing going on when time is so urgent?

Deflated

Tuesday afternoon I'm driving home from work and Terry calls. She's says she'll wait while I pull the car over and stop driving. This is bad news, I can tell.

Terry says she received a call from Dr. Sanchez with the final pathology report from Friday's biopsy. Remember there were 5 needle sized tissue samples taken from Steve's tumor in his brain? Two were checked during the actual procedure. The other three were checked afterwards and we weren't expecting the results until the end of this week. The results are needed before any radiation or chemotherapy can be started. It would also give us something to go by while we are trying to read about options for Steve's course of treatment since everything depends upon which type of cells are growing and how aggressively they are growing.

The bad news: the tumor is grade 4.

Not a 2 as Dr. Sanchez believed during the biopsy.

Not a 2 which would allow a longer life.

Now we are back to the very bad, aggressive tumor. The kind that requires treatment in clinical trials because the current form of treatment only allows most people to live 12 to 14 months.

The kind that only 6% of people live beyond 3 years.

The very bad kind.

We are deflated.

Flat.

In the Beginning

Several months ago, Steve began to have trouble finding the words he wanted to use. It seemed a bit unusual, but he was stressed at work, and he was getting older. Doesn't that kind of thing happen when you get older? One day, when he was having his usual lunch with a colleague, Steve Cox, our Steve couldn't say the words "iced tea". Steve Cox urged Steve to see his doctor about it. One evening when I was on the phone with Terry, Steve asked me about it. He said it had happened a few times, usually with several weeks in between. Fortunately, he was going to his doctor for a routine blood check that week and he told his doctor about it.

The doctor scheduled Steve for a CT scan on Friday, November 18, 2011.  Friday morning, Steve had his CT scan of the brain. That afternoon he and Terry picked up the key to their new house. They were moving a mile or two over in Santa Clarita to a larger home with a bedroom for each of the boys and some elbow room in the family room and a living room and separate dining room. Their phone landline was switched to the new house but their furniture wasn't being moved until Sunday. Later that night, Terry checked messages on the landline, "You have been scheduled Monday for an MRI and an afternoon appointment with the neurologist".

The nightmare begins.

Sunday the movers come and Steve and Terry move into their wonderful new house. They do a great job getting all the essentials unpacked although boxes are still scattered about. There's also a problem with the internet (isn't there always?) so no research is happening on their end.

Monday, Steve discovers there was a spot on the CT in the left temporal lobe, near the speech center of the brain. He has his MRI and meets with the neurologist. He is scheduled for another CT, this time with contrast, and an appointment with Dr. Sanchez, a neurosurgeon for Tuesday. Chrissy, Terry's sister, goes with Steve and Terry to that appointment. Later, they tell me the neurosurgeon doesn't want to do surgery because it's likely to make more consequences, like losing speech or becoming paralyzed on the right side of his body and that it won't make any difference in his life expectancy. It won't help and it might hurt. This is the surgeon telling them that so it must be true. After all, surgeons like to operate, don't they? He also says the tumor looks "busy" and is likely a primary tumor, based on how it presents (Not a tumor from another location which metastasized).

Wednesday, is a day of moving things in the house. Unfortunately, Steve has been having headaches and he was given Vicodin (5 mg codeine plus acetaminophen) which helps. Steve tries not to take too much though and he had pain as the pills wear off.

Thursday is Thanksgiving. They celebrate with Terry's family in their new house.

Gary and I drive down to visit Friday and stay the weekend. We help unpack some boxes and have a nice visit. Steve has obvious word finding difficulties but can get his meaning across by circling around a word until we guess it. He also has trouble completing some sentences, especially when his pain pills wear off and he rubs his forehead and closes his eyes. He takes short time outs when it's too loud. He does some work around the house, but only in short bursts. His attention is sometimes elsewhere. He lets us know he is having trouble concentrating.

Monday and Tuesday he has a repeat MRI and a third CT. He has appointments every day. We hear that the tumor has already grown from six days ago when compared to the previous MRI.

Those of us with internet and the desire to know what's going on have been looking up brain tumors. We learn a lot and realize there is a huge difference in prognosis depending on the type of cells and the aggressiveness, or grade of the tumor. The Bad One, a glioblastoma multiforme has a life expectancy of only 12 months. We worry that this is the kind Steve has because of the tumor probably being primary and because it is "busy" and because it has already grown a visible amount in only six days.

Wednesday, Steve, Terry and Lesley (Steve's and my sister) meet with the radiation oncologist, Dr. Miller. He is the next hope of trying to get rid of the tumor by radiation treatments. There is something called a Gamma Knife which uses radiation to kill tumor cells, right? He tells them he can't do anything unless he knows what type of tumor it is, so Steve has to have a biopsy. He tells them that Steve is likely to only live 12 to 14 months. Everyone is devastated. We're very upset. How can that be? Steve is so NICE! It's not fair! He's so young. He has young boys to raise. They just bought a new house. How will Terry pay for it if Steve is gone? He's got things to do. Places to go. Kids to raise!! Steve says his goal is to live to 65 to retirement age, so he can complete work.

Life is not fair sometimes. My little brother seems to have a time limit. I suppose we all do, and we can't know if something will befall us at any minute and we might be gone without any warning or any chance to say goodbye, but, geez Louise, it's wrong to think he may die before us, and possibly as soon as a year. We feel deflated.

Thursday, Steve and Terry don't have any doctors appointments or scans. They buy themselves a new mattress. Steve jokes about not needing the expensive mattress since it lasts years longer than the cheaper mattress. He and Terry decide to live life as if he will still be around, optimistically, and they buy the better mattress. They have lunch out at a favorite place, then a quiet evening home with the boys.

Friday, I arrive back at their house in the morning. I drive them to Kaiser in Woodland Hills (where we were raised) for Steve's biopsy to be done by Dr. Sanchez. We arrive on time about 11:30. Terry stays with Steve until 1:30 when he's taken off to CT scan. We hear later that this CT is used to program the machine which will take the actual tissue samples. He has a halo placed around his head, with local anesthesia and something that starts to make Steve loopy, Versaid? They take two tissue samples with the computer guided needle and send those to pathology. They wait an hour and a half while a discussion goes on about if more samples are needed and where to take them. They take a total of five samples. Steve is awake through the whole thing. He says everyone is really nice and they check on him, hold his hand while they wait for pathology to be completed. Terry, Greg, Chrissy and I wait hours in the crummy little waiting room. Lesley joins us later. About 7:00. Dr. Sanchez comes in and tells us great news. One, the initial pathology samples indicate the tumor seems to be grade 2, not the grade 4 we had feared and two, the black area on the MRI which had grown almost 3 cm over 6 days was likely edema (swelling) mixed with debris, dead cells, etc. and that did not expand over the 4 days between the last scans. He thinks the dexamethasone corticosteroid has slowed it's expansion and should keep it under control.

Yippee!!! Those with smart phones with internet access look up the grade 2 gliomas. We find one, the oliogodendroglioma has a life expectancy of 12 to 16 Years! What a change in possibilities. Steve can watch his boys grow up after all! The tumor size is being controlled by the steroids. The grade 2 grows slower so we have some time to find treatment options! There is hope after all.

We visit Steve in recovery. He looks great. He has a bandage, not more than two inches square behind his left ear and some red sores on his forehead from the halo (they look like horns were there, hehe). Steve breezed through his recovery. About 11:00 pm he transfers to the ICU for the night. Terry stays with him. She had been told there are cots she can use but, it turns out they were all being used. She tried to sleep on a chair and the floor, but neither of them got any sleep with all the interruptions and goings-on. Steve HATED the foley catheter. He said it was worse than the brain surgery.

I picked them up Saturday morning and took them home. They were both exhausted and they took a 4 hour nap. Their wonderful neighbor, Wendy, had taken care of Nathan and Adam and she and Terry's mom had cleaned the house on Friday. Wendy emptied boxes in the garage and got the shelves filled with their stuff.

Saturday and Sunday went well, only complicated by constipation which comes from the codeine. It seems the previous week, around Monday, Steve's pain pills were increased from Vicodin to Norco (10 mg codeine and acetaminophen). Steve had a belly ache and rumbles. We went to the store to buy him stuff to help. It took a few days, but eventually his system got to working again. Steve also complained about the discomfort from the foley for a short while. Poor boy. On the up side, he thought his language skills were better than before with fewer missing words. He pretty much completed all his own sentences, too. We attributed that to the steroids working and diminishing the edema (which pressed on Broca's area, the speech center). Many folks came to help. Steve's bosses from work have been super great, reassuring Steve as best they can about work and helping with insurance and disability. Colleagues and friends have sent gifts and made phone calls. Everyone has been supportive. Friends are planning to help put up the Christmas lights soon. Nathan and I put up some decorations inside the house.

Monday was an uneventful day with Terry dealing with insurance documents and scheduling the next doctor's appointments. Steve tried to keep his system working and puttered around the house.

That takes us up to today.