Dan Sams & Friends

sorry so long...(again)

2009-04-15T12:15:00.004-04:00

leah's painting

the kids hunting eggs

sunrise on Easter morning

headed to the father daughter dance

hello everyone,

i am SO sorry it has taken me a long time to post. i have been experiencing what i think is writers block. i am the type of person that needs to feel inspired to write. lately, sadly, i have not felt that inspiration.

i thank all of you who have patiently awaited my response and are still checking and posting.

the news is good. every two months i go in for an MRI and then a follow up appointment with dr. nick and duke university. we had a good scare a few months back, but after careful scrutiny and follow up, everything seems to be fine. one of my radiologists found an 8mm growth which could have been a re-growth of the tumor. it turned out to be a "gliosis", which is basically the brains form of a "scab". i had to travel back to orlando for a "super" MRI, which is where the magnet in the machine is twice as strong as a normal scan. the test takes twice as long, they put a clamp around your head, and it is twice as loud. all in all, not a fun experience. four weeks after the super scan i had another regular MR for comparison. all looked good.

the only major problem i am still having is my blood. all of my counts are still down. my doctor tells me this is a result of the massive amount of chemo i endured. the side effects i experience as a result of this are fatigue and a lack of endurance. other than a few memory issues i am doing fine.

our family is doing very well. the kids are enjoying school but still counting the weeks to summer vacation. we have plans to spend time with our extended family doing things we were not able to last summer because of chemotherapy.

i have enjoyed reading your posts.

thank you for your loving support and prayers.

sincerely,

dan

Been A'While...

2008-11-22T09:59:00.004-05:00

hello to all!

sorry it has been so long since my last update. i had a period of time when i wasn't doing so well. my last two rounds of chemo were really tough. both rounds had to be delayed because of my platelet count. (platelet's are vital for feeling well. they are related directly to bone marrow which is important for bruising, bleeding, fatigue etc... also, the chemo i was on can cause leukemia if pushed too far.) many people with GBM IV are not able to tolerate the entire treatment. a gentleman i know up north had to quit the chemo during his radiation and have a blood transfusion due to his platelet count dropping low. without the chemo, the cancer can progress quickly.

luckily, i am now feeling A LOT better. i had a week where i was tapering down off some of the stronger meds that i am on and had an incident where i wound up being taken to the E.R. by the paramedics. not fun! i do have say that vero beach has an incredible medical system. from the time 911 was called and the paramedics arrived was about five minutes. when we got to the hospital i was seen right away and discharged that night. my father happened to be in town during this time and when the paramedics arrived they weren't sure who needed the help, me or my dad! (it actually wasn't that funny, my poor dad thought i was dying.) i seemed to have given everyone a good scare, myself included. poor Leah had to be called and told i was in the hospital which caused her some anxiety. well, thank God that is all behind us know.

the reason for my post is that i saw dr. nick on Tuesday and had a good report. (plus I'm feeling up to writing which i haven't for awhile.) it turns out i won't have to wear the novo cure helmet unless i have regrowth. www.novocuretrial.com if you go to this website, try to find the pictures of the device. i would've had to wear this thing 24/7 almost indefinitely. i guess that would be better than the alternative, which could be death if this tumor comes back. apparently I've got about a good chance for a recurrence with this type of cancer. my initial diagnosis in July of '07 was for 9-12 months survival. i am now 4 months past that date and doing well. i had an MRI on Friday and as far as dr. Leah sams and i can tell, the tumor site looks good. we will get the official results some time on Monday, but we feel good with what we see. (or should i say, don't see?)

i know a lot of you have been praying for me, which i feel has been instrumental in my recovery. the Lord works in mysterious ways. every incident that has happened since my diagnosis, (good and bad) has ultimately been a blessing. even at first if whatever is happening seems bad, (like calling 911) the end result has turned out good. i can't fully explain all that has happened, but i can tell you that i feel the Lord's presence in my life more than ever before. i can't help but speculate that all of this has happened for a reason that will eventually be revealed to me once i am truly feeling better. i am still recovering from the year of intense chemo therapy. i won't list all the side effects because most of them are unpleasant and nasty. (let me just say that during my really bad week i lost about 20 pounds!) overall every day gets a little better.

i have had a lot of people ask me what i do now with my time. somehow i don't feel idle at all. at the end of the day i am ready for bed! of course, as tired as i am, my bedtime is early. (on the nights i can sleep, that is. some nights i get in bed and stare at the ceiling until midnight or so.) i have had some bad bouts of insomnia recently. that will make you feel crazy after awhile. dr. nick recently changed up my night time meds trying to balance out my melatonin. so far it seems to be working except some mornings i wake up feeling groggy. hopefully that will pass.

since i have been feeling better, leah has been able to take an oil painting class at the museum of art. she loves it! she is very talented and her paintings are beautiful. she seems to have a natural knack for it. i am very proud of her. it's good to see her happy and enjoying her painting.

all in all, the last month has been good to me. with this kind of disease it is a day by day process. so far my good days are more than my bad, which is a blessing. thanks again to all of you who have sent messages and posted. i will get back to those of you who have asked for contact.

God bless all of you!

sincerely,

dan

A New Day

2008-11-06T21:53:00.005-05:00

Dear Friends,

Who could have imagined this journey?

I am so glad that our days are illuminated one at at time. We are given such a gift in our temporal existence. Today is a good day. Yesterday was a good day. I am posting a picture that my dad took of Danny on a quail hunt (just yesterday). It was only the second time that Dan and I have been apart for more than a few hours in months. The last time was two weeks back when Dan went to a movie with his dad (who was in town for a visit from Texas). That day, I was called to meet Danny and his dad at the hospital where Dan had been taken after he had a seizure while at the movie theater--scary.

Yesterday was different. There were no emergencies and all was well. It was amazingly quiet here at the house without Dan. I stayed busy but very vigilant (I must have checked my cell phone a hundred times).

Dan's seizure was probably a result of scar-tissue in his brain and should be controllable with medication. We will visit with Dr. Nick on the 18th to discuss the Novo-Cure helmet among other things. I will keep you all posted as I know more. For the time being, Dan has to put up with my driving...he seems quite stoic about the whole thing...for now.

As for me, I am enjoying every moment with Dan and the kids. I tell you, truly, the air is still different in my world. It is no longer too thin to sustain my breath, but it has taken on richer qualities. I relish in the very smell of those that I love. I appreciate the fact that they (and you) are here.

Love,
Leah

Joyful, Joyful!!!

2008-10-22T09:35:00.003-04:00

We had a good visit with Dr. Reardon at Duke. Dan's scans both showed no cancer activity!!! The emotional boost from that was HUGE. Dan is starting a new program to deal with the chemo fall-out. I believe that Dan has suffered the worst of the side-effects of his chemo and that he should feel a little better every day. I cannot wait for him to feel well. We are going to start doing a lot of things to help with peace and memory (yoga, massage, new diet, etc.).

We cannot thank you enough for your prayers. There is no way that we would be able to face this cancer without God. I know that He is with us every step of the way. There were hard moments over the past 2 weeks that I was so overwhelmed with the task at hand that I could not even find words to pray. In my heart I knew that you were there praying for Dan when I could not...and all I needed to say was, "Amen." Thank you so much.

Love,
Leah

P.S. I have been reading, The Problem of Pain, written by one of my favorite authors, C.S. Lewis. In it he writes about many aspects of pain and suffering. One of my favorite ideas is the thought that pain, "When it is over, it is over, and the natural sequel is joy." We all understand joy more deeply when we have experienced its counterpart, pain.

Prayers Needed

2008-10-05T09:53:00.003-04:00

We are in real need of prayer this week. Dan's having a lot of confusion and he is not able to stay awake. His doctors changed his steroid in an effort to get him on a less damaging one, but it has sent him into a major set back. We started his old steroid back at a high dose last night in an effort to "re-boot" his brain. He will have a fast taper to get him to a more tolerable dose as quickly as possible.

From what I understand the brain needs 2 main things to function (glucose and steroid). Apparently, Dan's body no longer makes a natural form of steroid due to his chemo and radiation. So he requires the medication to keep everything working. We are in hopes that this will do the trick.

As I mentioned in my last post Dan will have his 2 scans (PET and MRI) this week. We are very anxious to get a clean report. Until then, please continue to hold Dan up to the Lord in prayer. We surrender this situation to Jesus and look forward to the revelation of God's plan for us (in the knowledge that He loves us perfectly).

Thank you for your continued support.

Love,
Leah

The End of Chemo--We Hope!

2008-09-29T08:35:00.005-04:00

We have reached a real milestone. Dan has taken his last dose of chemo for this round. When the toxin leaves his body completely (in another week or so) he will have completed his 52 week marathon. We are looking forward to his MRI and PET scans to make sure that he doesn't have any active cancer before Danny begins his holiday.

It is amazing how the Lord has marked our journey so clearly and yet he never revealed his path in advance. Rather, as conflicts and choices arose over this past year answers and solutions have become apparent just in the nick of time. We were in constant flux as to when Dan would end his chemo. Should he continue? Should he stop? It was a bit scary to think that the chemotherapy might be the only thing standing between Dan and regrowth. We have prayed for discernment (as have many of you) and God has been good and provided the answers we needed for peace at this time.

Dan's body cannot tolerate any more toxin right now. Partly due to his good health and body size he has been taking massive doses of chemo for quite a long time. It is time to detoxify. We have gotten to the point where the benefits no longer outweigh the drawbacks of treatment. Therefore, we will rest for a while.

Please continue to hold Dan in your prayers. This type of cancer is not yet considered curable. His chances of regrowth in the next few years is over 95%. Emotionally this is a hard thing to have hanging around. We are excited about many different curative options on the horizon. In November papers on the Novo Cure Helmet will be presented for clinical trials. We are in the position to be in Phase I of the trial. From what I understand it is a helmet that (through electrodes attached to the head) sends out alternating electrical currents that attack rapidly dividing cells. Dan would have to have his head shaved and we are not certain how long he would wear the helmet, but those are small things in the greater picture.

The kids and I are looking forward to the holiday season. We have decorated the house for Halloween and Mary Kathryn and Ross have great plans for Christmas. We pray that Dan will get stronger and stronger during this time. Even though he is home with us, Dan has been overwhelmingly tired and mentally worn from the treatment. MK and Ross have been patiently waiting for their daddy to feel better (I, too, have been waiting--admittedly not as patiently as I would have liked). We are all anticipating a period of peace and rejuvenation during this season of celebrations.

Lots of love,
Leah

The Home Stretch

2008-08-27T09:22:00.007-04:00

Dan with his mom, Susie, and his dad, Bob!

Ross in Ft. Meyers with his cousins, Kyle and Trevor

Our Family at the High Hampton Inn in NC

Ross and MK with their cousins Lillie, Sarah Anne and Laander at Sunset Rock

Dear Friends and Family,

We are back from a busy summer of travel. We intended to be home last week, but we stayed in the mountains to avoid tropical storm Fay (with me driving I thought it was prudent to wait until the roads were dry).

We had a wonderful visit with Dr. Reardon at Duke. Dan's MRI was clean again (yahoo!), but his platelets were critically low. So we are opting to finish chemo in one month. His last round was lowered by 25% and it was much more tolerable. Dan's platelets are up above 100 and his energy is better than it has been in quite some time. His next round will probably be an even lower dosage.

After that we will have an MRI and a PET scan to make sure that there are no nasty tumor spiders hanging around. If not, he will begin his chemo holiday. It will be a time to get his body strengthened and prepared for what ever is to come (we are hoping for a VERY long time of no regrowth).

Dan's current dragon is pain. We are going to try a new approach (new medications, meditation, yoga, massage, etc.). Hopefully, as the final chemo leaves his body he will be able to achieve a real state of peace both mentally and physically.

Thank you, again, for your continued prayers and support. This is not over, but we do seem to be at a point of restoration for the time being.

Lots of love,
Leah (and crew)

Summer News

2008-07-28T02:03:00.006-04:00

Dan and I just returned from a trip to Disney World to celebrate our 11th anniversary and MK's birthday. We are happily exhausted. It was kind of crazy to go a week after chemo, but it actually worked out well. Dan was able to sleep undisturbed while the kids and I were roaming around in the hot, hot sun having a "good time." Dan would meet us in the afternoons (looking much more crisp and perky than the 3 of us) ride a few rides and take us all out to dinner. Heather, Roger, Justin, Chase and Carley all worked together to make sure that MK had a proper birthday (with cake and candles to boot). "Thanks," guys!

We will be home, in Vero, for a week and then we are headed to Ft. Meyers to visit with Danny's whole family. After that, we are off to Duke and another exciting round of chemo. Please pray for discernment, clarity and wisdom for us during this trip to Duke. Dan is at a real cross-roads in his treatment. The side-effects from his chemotherapy are becoming rapidly more pronounced. We are trying to weigh the benefits of the treatment with Dan's quality of life.

I will write more as I know it. Right now we are living one hour at a time. Dan's biggest challenge is fatigue. He is so incredibly tired (from the chemo) that staying awake for more than a few hours at a time has become difficult. I hope that he will be more energized as we move further away from his last dose of chemo (we are back on the 5 days on 23 days off schedule)...Dan's next chemo will be on 8/11...too soon for me (but you gotta love the clear MRI's)!

Love,
Leah

Happy Anniversary Danny Boy!!!

2008-07-07T23:42:00.007-04:00

This blog is to celebrate Dan's one-year from diagnosis anniversary...One year ago 7/8/07, Mary Kathryn, Ross and I took Dan to the ER for a headache where we were told that a tumor would change our lives forever...Within 48 hours we were told that Dan would quite possibly lose all quality of life and life itself within that year.

That did not happen...

Here is to reclaiming life...only God knows the number of our days!!!

Happy Anniversary, Sweetheart!
Love to you all,
Leah

"Offer praise to God our Savior because of our Lord Jesus Christ! Only God can keep you from falling and make you pure and joyful in his glorious presence. Before time began and now and forevermore, God is worthy of glory, honor, power, and authority. Amen." Jude 24-25

Back from Duke, again!

2008-06-20T09:49:00.011-04:00

Dan is resting comfortably on day 3 of his new chemo routine. He will have two more night-time doses and then 23 days off. Sound familiar? We are back on Temodar (our original chemo). We will do this for 3 more months and head back up to Duke for our new orders. By the way...DAN HAD A CLEAN MRI!!!!! We are elated that this chemo regimine seems to be holding the cancer at bay. It takes an amazingly strong person to "tough out" all of the side effects, but Dan is nothing if not strong. When we finish this 3-month cycle of Temodar, Dan will officially hit the 52 weeks/1 year of chemo status. At that point the doctors will check-out Dan's health to determine if he is eligible to receive more chemo. If so, we may continue to take chemotherapy for up to another year. If not, Dan will take a chemo holiday that will last an undetermined amount of time (until regrowth of tumor--forever I hope).

We have been up in the mountains of N.C. with my parents since early June and it has been wonderful. We head back to Florida next Friday. This time has been truly set-apart from the rest of our "normal" lives...or should I say new-normal lives. We wake up each morning to the sun rising over the mountain range to our east. Our days are filled with mild nature walks and fun dinners with family. It is easy to live in the moment when you are so completely aware of God's amazing power (through his beautiful creation). Even the drive down the mountain to the grocery store can just take your breath away.

I haven't written in a while because Dan keeps wanting to post, but he gets tired by the time it comes to do some writing. I have to say that he is in the final leg of this chemo thing and his concentration must remain inwardly focused in order to reach his goal. He is not really able to make phone calls and maintain a heavy social calendar due to the side-effects of chemo...BUT...at the same time, I encourage you to continue to call, write and reach-out to him. We have to remind him that we are here for him. I know that this is temporary. In a few months he will finish this treatment and his body will become stronger. He will have more energy and be able to reach out to you all. We will have a real holiday from this cancer.

To say that Dan and I are weary from this battle with cancer is an understatement. We are exhausted. Emotionally, it is bone-wearying to live with this kind of stress and yet, we remain joyful. Our hearts are broken over the loss of our friend's 12-day-old baby this past week. Dan's grandmother went on Hospice this week, as well. Yet, life is good and God is good all the time. We received news that another friend is expecting a new baby boy. We still have Dan with us and he is able to walk and talk and hold us in his arms. We have two beautiful children who love us despite our weaknesses. Next month we will be attending the first service ever of our new church, Christ Church, in Vero Beach. Life is not what I expected but it seems that as long as I continue to trust in Jesus it turns out remarkably more rich and fulfilling than my original desires.

In July we will celebrate Dan's year anniversary (a day that he never thought to see). We will also celebrate our 11th anniversary (a day that I have prayed for since Dan's surgeon gave him the 9-12 month prognosis). Finally, we will celebrate MK's 8th birthday--hooray!!! We have much to be thankful for. Thank you for loving us.

Lots of love,
Leah and crew

Sunset Rock overlooking Higlands, NC

Quick Update--counts up!

2008-05-21T09:41:00.008-04:00

MK and Ross at their 1st communion

Dan, Ross and Bob hanging out!

Leah and Ross at Jr. K "Pet Show"

MK trying new foods--no more picky eaters!!!

Yesterday we went to visit with Dan's local oncologist for his labwork and a quick check-up. His platelet count is up to 140 on his own and he is doing great!!! The oncologist doesn't expect for Dan's platelet counts to drop again for at least another week or two. Dan was given the go-ahead for light weight lifting and fast walking. We just came back from a morning walk! Dan's dad, Bob, arrived yesterday afternoon for a little visit and we are really enjoying his peaceful presence.

A few posts back I noted that M.K. was having her heart checked out. The update for that is a possible mitral valve prolapse which is extremely common (especially in women). We have a follow-up with a pediatric cardiologist in a few weeks just as a precaution.

My parents left for N.C. a few days ago and Dan and I are hoping to join them for a few weeks once school lets out in June. Dan and I are so excited about spending this summer with the children. It is amazing how busy Dan has been throughout their short lives. This diagnosis has been a blessing in so many ways (believe it or not) and one of the most dramatic has been the relationship that Dan has been able to develop with the children.

I read in the paper that Senator Kennedy was diagnosed with a glioma (I am not sure of the grade), but the papers are so gloomy. I know that this diagnosis is amazingly scary, but don't be discouraged by the press. God is the ultimate physician and he created everyone uniquely. I truly believe that medical science is on the cusp of conquering this cancer, and although this is a devastating diagnosis for the senator, I pray that this media exposure can help facilitate finding a cure. My heart just breaks to think of anyone else facing this battle, but as I said earlier, every battle in our lives can lead to blessings if we just allow Jesus to work within us.

Love,
Leah

Chemo--Week 36

2008-05-13T10:23:00.005-04:00

Dan and I went to see his NO (neuro-oncologist) yesterday where he received his second dose of CCNU. His platelet count is very low and expected to lower during the next 6 weeks. Dan's physical activity was limited by doctor's orders in order to reduce any potentially dangerous "bleeds" and that has Dan a little down. He had just started running again, but that is on hold for now. We are checking his count every week now (it was around 100 today) if it gets in the 20-30 range he will have a platelet transfusion.

Last week we celebrated Dan's 9 month anniversary from diagnosis (7/8/2007). We are looking forward to his 1 year anniversary when we can officially thumb our noses at his prognosis and live as "outliers"--or someone who does not fall into the statistical norm. Even though Dan and I strive to live our lives day-to-day we do look forward to celebrating each milestone no matter how humble in ambition.

As for Dan's planned treatment schedule...If the cancer continues to be controlled (suppressed--or conquered, as I prefer to think) and Dan's blood counts do not bottom out, then Dan and I will go back to Duke on June 16th where Dan will have another MRI. If that goes well, then Dan will begin another 3 cycles of Temodar (or 12 weeks of oral chemo). We will continue on is this fashion cycling through the 3 types of chemo therapies for as long as his body can tolerate it (up to 2 years). At that point we will begin a "chemo holiday" that will last for an undetermined amount of time--until regrowth. If Dan has re-growth at any point we will start over with surgery and move on from there. As for the curative front...there are several studies in trial now that are potentially curative in nature. I have met many individuals (through the internet) who are several years out from diagnosis without regrowth of tumor. The major determining factors seem to be age, health at onset, and genetic predisposition.

Dan and I are doing well. His energy level is low (due to chemo), but his memory is improving and we are having fun together. We are incredibly grateful for you. There are days and weeks where it is difficult to get outside of our own situation and really interact with you, our support system. We really appreciate the support that we receive and we look forward to the day when Dan is totally restored and we are able to be of active service to you in return. Until then, know that we lift you all up in daily prayer and we are ever hopeful for a perfect tomorrow.

Much love,
Leah and Danny

More good news!

2008-04-29T19:55:00.004-04:00

Dan had his blood checked today and his counts are in the normal range. We have started to taper down on his steroids and his NO (neuro-oncologist) is re-adjusting the rest of his meds (he took 52 pill today alone) in order to see if that can account for his side-effects. Depending on how well we make it through the next week, the NO will try for another round of the CCNU (chemo) on May 12.

MK had her annual check-up yesterday and her doctor found a heart murmur that has not been there in the past. We are going to get an EKG on May 8th just to make sure all is well. The doctor is not concerned, but we might as well be careful and check it out.

We are so thankful for today. So many days we take our physical and mental health for granted and this past year has really blessed Dan and I with new eyes to see, new ears to hear and new hearts to love one another without expectations.

May God bless you and keep you, tonight!
Leah

Praise Report!!! Clean MRI

2008-04-28T20:38:00.002-04:00

We can praise God for another clean MRI! The MRI results have preliminarily eliminated re-growth of tumor from Dan's list of possible complications. The steroid increase seems to have leveled Dan out and he is back to himself--Thank you, Jesus!!!

If all continues on this path, we expect to be back to our "normal lives" asap. Your prayers have been life-sustaining over the last few days. Thank you, again.

I am happily exhausted and ready for a good night of sleep. Susie (Dan's mom) made it here safely and we had a soul-satisfying dinner at my parent's house tonight. I thank God for you each of you who encouraged us to turn to Him instead of falling into the grip of fear and I thank God for this moment of peace.

Sweet dreams,
Leah (and Dan)

Udated Prayer Request for the weekend

2008-04-26T12:37:00.003-04:00

Hey,

Dan is having a tough weekend. We have increased his steroids and he is resting comfortably. We are in contact with his NO (neuro-oncologist) and we are going to try to get a MRI approved for Monday. If there are any changes in his condition, then we will go to the ER and have a scan through the hospital. As for now his condition is not getting any worse so we will try to ride out the weekend (isn't it amazing how everything happens @ 5PM on a Friday night)!!!

Thank you for your continued prayers and support and I will update as things change. We are so fortunate to be in town with my parents and Dan's mom was already scheduled to visit on Monday, so we will have a lot of help. Terri and Rob (some of our friends from Celebration) are staying at the Disney Vero Beach Resort this weekend, so the kids are having a blast playing with their buddies--"Thank you," Z family!!!

Love,
Leah

***Update (midnight 4/27)...Dan is doing much better. I have uploaded a photo of him resting comfortably in Mom and Dad's hammock! Thank you for your prayers. I will update soon.

Home Sweet Home

2008-04-22T20:55:00.007-04:00

We made it to Vero without too much trouble. The move has been a bit overwhelming, but we seem to have made it. The kids have transitioned well to their new school and Dan and I are working hard (with the help of our parents) to make our beautiful house into our beloved home.

Dan has had the hardest time of it. We moved on a Thursday and Dan was right back to a new chemo regimen by Monday. This new round has hit him hard in the fatigue area. He has a hard time staying awake for extended periods of time. We also had a difficult time transferring our medications to the local pharmacy. As a result, we have had a few weeks of real challenges. Dan seems to be stable for the moment and we are actually able to enjoy the new home. Last night we ate dinner and spent a little while in the hot tub before bed.

Tomorrow we are going to meet with a local oncologist and get Dan's lab work done for the week. His blood counts are good for now and we are encouraged that he will be able to continue his chemo. We are specifically praying for clarity of thought, memory, wisdom and discernment.

I saw that some of Dan's SAE brothers have posted this week following the death of one of their brothers, Robert Dykes II. Robert has a son, Matthew, whom he used to bring to events when we were in college. Robert was a deputy in the Hillsborough County Sheriff's Office. He died of apparent suicide related to stress at work.

My heart just breaks over this loss. Due to Dan's inability to work during this time of treatment, I have begun to realize how much men depend on their work to define them. As a wife, daughter, sister, granddaughter, aunt and mother of a boy, I also realize how little a job actually defines the men that I love. If every man knew the joy that their mothers felt when they did little more than breathe their first breath, they would never feel less than perfectly created.

This week I pray that the men in our lives feel honored, loved and important. I also ask for prayers for Robert and the family and friends he left behind. Finally, I ask for prayers for our new church home, Trinity Episcopal. This is the church that I was reared in, married in and I love deeply. It is going through a great trial right now. I pray that God will direct, strengthen and empower the clergy and congregation to do the work that God intended for them to do for His glory.

Many blessing,
Leah

Happily Ever After

2008-03-29T05:43:00.006-04:00

Our Dade City family showed their Team Dan spirit on Easter Sunday!

MK and Ross celebrated Easter in Vero with Leah's parents.

Dear Friends,

So much has happened over the last month it is almost too much to digest. First and foremost, Dan's MRI showed no progression of the cancer!!! We met with Dan's neuro-oncology team at Duke this past Monday where we mapped out our next 12 week chemo plan. Dan will begin his new routine on Monday (3/31). This will be a pill taken once every 6 weeks. Dan's blood will be monitored weekly to make sure that all of his counts remain strong. We continue to give praise to God for Dan's health and for providing for our family. We are also extremely thankful for our wonderful friends, Mike and Kelly, who graciously cared for us during our trip to NC.

We moved into our new home this past Thursday. It is lovely. Dan and I were taking some empty boxes to the curb on Thursday night when we both stopped and just listened. Being from Orlando we are so used to the sound of busyness that we were overwhelmed by the tranquillity of the moment. It was far from silent, but the sounds were of nature and over it all was the beautiful rhythm of the Atlantic ocean. We truly believe that we are living in God's will and we are looking forward to a season of peace and continued healing.

I think that is particularly poignant that our next life-chapter begins at Easter. As Christians, we believe that Easter is when Jesus conquered death. It is the time when we focus on the joy of eternal life. We are no longer measured by the mistakes we have made in the past, our transgressions are made clean by the perfect sacrifice of Jesus, and our future is now unlimited. There is no better time to start anew than this!

The kids are looking forward to starting in their new school on Monday. They are on Spring Break this week. Both of their new teachers took time away from their families to give the children the opportunity to walk around their new classes and quell their anxieties. Last week, our wonderful friends at Windermere Prep gave MK and Ross two HUGE "going away" parties. MK and Ross were given handmade cards, letters, gifts and memories that will sustain them when they feel lonely or afraid.

While I am on the subject of celebrations...Dan's company, Stryker Medical, had a wonderful dinner to honor the work that Dan did for them. People flew in from as far away as NJ to celebrate Dan's "retirement." It was a very honoring way for us to close that chapter of our lives.

It is always hard to say goodbye to friends. Leaving my Bible study was a particularly tender moment for me. I am so proud of the work that God has done with those wonderful women and I cannot wait to see the fruit that they produce in the future!

The amount of love and good wishes that we have received over the last few weeks has been simply awesome. I am grateful that we are not moving further away from Celebration. Each member of our family has developed life-long friendships that are our tangible (and thankfully portable) treasures.

One of my dear friends told me that you cannot fully embrace a new beginning until you have fully celebrated the ending. We have tried to do this. We are so pleased and thankful for the last chapter of our lives! Our friends will remain with us and change is unavoidable. We can look back over the last years of our lives and see God's fingerprints everywhere. Therefore, it is with great joy and contentment that we await the unfolding of our future here in Vero Beach.

Many blessings,
Leah (and Dan)

Dan's 33rd Birthday!!!

2008-03-08T09:00:00.007-05:00

Dan forgot to mention that I was not the only one getting a little older this week. We celebrated his birthday with a family dinner last Wednesday!~Leah

It's My Birthday!

2008-03-05T13:17:00.002-05:00

Hello everyone! I know it has been awhile since my last post, but after Leah's incredible writing I felt I needed to wait awhile till I wrote again. Her words are very hard to follow sometimes. A lot has happened since we last wrote. Leah celebrated her birthday last Saturday, March 1st. This was the day after my chemo treatment and we went to Vero Beach to celebrate with her folks and the children. Upon walking in the door around 5:30pm on Friday we were greeted by a very excited Mary Kathryn and Ross. They had decorated Lionel and Kathy's house with a "Happy Birthday" sign and balloons and streamers and a home made cake that said, "Happy Birthday Mom." The table was covered with a birthday tablecloth and the house looked really nice. This was all a surprise, by the way, by which Leah seemed to be quite taken. All the credit for setting this up goes to my mother-in-law, Kathy. Kathy, thank you very much. Your efforts were MUCH appreciated. To be able to orchestrate the cooking and decorating of the cake with the children was amazing. Thank you for your love and patience.

On the actual day of Leah's birthday I slept and the rest of the family went to the beach. By the time I got up everyone was returning and ready for lunch. After lunch it was time for Leah to go to the special day Kathy had set up for her at their club's private spa. Leah was treated to a facial and scalp massage and had an all around good time. When she returned home she looked very relaxed and ready for a nap. That night we had sushi for dinner and celebrated Leah's birthday for real. It was a very nice time and we all enjoyed being together. Thanks, again, to Kathy for helping me make Leah's day special.

We got some great news from our realtor over the weekend. We have a contract on our house! I do not want to go into specifics for fear of violating some law or another, but I can say this; Leah was feeling uneasy on Sunday morning on the way back from church and what she prayed for is exactly what God delivered! The power of prayer is an amazing power, folks. I can now recount several stories of divine intervention that have taken place since my diagnosis that confirm the presence of God by my side. If you have ever heard of the story, "Footprints," I feel like the Lord is carrying us right now. We will be moving on the 26th and 27th of March and coming back to close on the 31st. That just happens to be the week my in-laws were going to have the kids for our trip to Duke over Easter weekend. This is also the week of Mary Kathryn and Ross's spring break at their new school! Talk about timing! Everything seems to be happening so smoothly--it is almost frightening. Between now and the closing date we are going to be so busy it scares me. Getting ready for the move and keeping up with everything else in normal life is going to be interesting. (As normal as our lives are right now, that is.)

Just to highlight some of what we have coming up; This coming weekend we have 2 birthday parties for the kids and then Sunday is the annual Steeple Chase horse race in Dade City. The following week I have a dinner with Stryker on Wednesday and then my Mom arrives the next day from Texas. My mother is here to help with the children for my last round of CPT-11 chemo before I go to the new program. So Friday will be my last round of the current chemo program which should be a lot of fun. The last treatment I had I was not given the usual anti-anxiety meds or the anti-nausea meds. Oh, and it took 3 times to get my I.V. line in, AGAIN! (You can tell I'm really looking forward to this last one, right?) Friday night is Ross's t-ball game which I AM looking forward to. We have a great team this season and the kids all seem to enjoy playing. I know Ross is having a great time so far. On Monday the 17th I will take my Mom to the airport and then return to the house to meet Alberto, my safe guy. This is the gentleman who will be moving my 1,500 pound safe to our new house in Vero. Friday we will head to Vero again to drop the kids off so we can travel to Duke on Easter Sunday for my appointment on Monday the 24th. We return late Monday night and the following Wednesday the movers will show up to pack and load. Thursday the physical move will occur and Friday I am going turkey hunting for the weekend with some friends and family. We then come back to Celebration to close on the 31st, also the kids first day of school in Vero. Sound exciting? Overwhelming? I'll be lucky if Leah and I can keep it together during this time.

Pray for us, friends, we need it now more than ever. I know God would not over extend us during this time. I rest comfortable in the knowledge that what lays ahead looks difficult but is not impossible. Sorry this post was so long coming, but thanks again for all your support. We love you!

Sincerely,

Dan and Leah

Good News!

2008-02-17T08:11:00.005-05:00

Mary Kathryn cleaning some of her treasures from Vero Beach

Dan and Bob at the Cancer Center

Dan had a non-eventful morning at the cancer institute this past Friday. He enjoyed having his father with him and the oncology nurses were running at max speed. I spent the morning having my hair done (quite a luxury!) and I met up with the boys after lunch. The minute that I walked into the office, I found out that Dan was in a patient room with his neuro oncologist. I ran back (feeling quite guilty that I had taken the morning for myself) only to see them all shaking hands and laughing. Apparently, they had just sat down for an unscheduled meeting moments earlier (providence at work).

We had a lovely talk with Dr. Nick about Dan's treatment routine and the next few steps (barring any adverse reactions). It was wonderful and encouraging. As we were winding down Dan asked Dr. Nick what he thought of the last MRI (we hadn't had a formal meeting over it for various reasons). Dr. Nick just beamed at Dan. He told Dan that it looked great! He even went so far as to say that it looked "squeaky clean!" Dr. Nick is not the type of doctor to just give us false hope. He is very optimistic, yet utterly truthful. If Dr. Nick says that Dan's last MRI is sqeaky clean, then it was. YAHOO! What does this mean?

It means that (a) the chemotherapy is effective and there is no visible cancer growth, (b) the cancer is being held in a non-reproductive state, or (c) Dan has been miraculously healed by God. Time will tell, but this is good news. We now know that Dan's current discomfort is probably from chemo (not cancer) and that his pain is possibly a lingering effect of the brain surgery, not tumor invasion. It also gives us time to work within the boundaries of Dan's particular strain of cancer. If we find out that one of the 3 chemotherapies allow the tumor to regrow, then we have a good chance of stopping it again with one of the other two chemos.

Dan's immune system is taking a big hit with this chemo and so we are still laying low for the time being. He will finish this course of treatment on March 14. We will have another MRI at that time to see if the CPT-11/Avastin combo worked, and we will fly up to Duke on Easter Sunday. Two weeks later we will begin the CCNU chemo. This will involve a pill dose every 6 weeks for a total of 2 pill doses. It sounds easier (and due to the lack of IV dosing it will be much more convienent). He will have to take the pills at the oncology office to make sure that he doesn't have an allergic reaction, but then he will be home to recover for 6 weeks. How does that work?

Believe me, I asked how one pill dose every 6 weeks could possibly be as effective as IV chemo every 2 weeks. Apparently, each chemo is gauged by how it effects the cells verses how much your body can tolerate berfore the toxins kill you. Different chemos hit your cells at different stages in the cellular life-cycle. The pill form of chemo that we are taking in the next round is much harder on the bone marrow. The CCNU attacks the younger versions of the cancer (and healthy) cells and has a longer "effective zone" as the cells mature. Therefore, if you take it too close together you would destroy the bone marrow completely as there wouldn't be enough young cells to mature into adult/fully-functioning cells. The current IV chemo is tough on the white blood cells and any fast growing cells (like Dan's digestive system). So, each chemo is tough in its own way. That is why we are doing this form of treatment. We are attacking Dan's cancer from every possible vantage point and due to Dan's strong body, the doctors are able to use the most powerful and effective treatments available.

As for now, we are winning the fight! Dan is sleeping late this morning (a minor miracle thanks, in part, to my parents who are watching our children today). Dan and I couldn't be more content and energized by our meeting with Dr. Nick. Bob, Dan's dad, flew home yesterday. Boy, was it nice to have him here. It was nice to know that Dan was in loving hands while I was able to take a little vanity break (never underestimate the effects of a good hair day). I know that Bob needed to hear some good news as much as Dan and I did. We are all walking on cloud nine right now.

It is amazing to live such an emotionally raw exhistance. I feel everything so intensely and deeply. I can no longer shield myself from the pain that I see in others. Each visit to the cancer center I meet another family suffering the painful effects of cancer. This week I met a lovely woman in her 30's with GBM. She was diagnosed in November and has just finished her chemo/radiation regimen. I met her as she was being sent home without treatment due to failing veins. Her veins could not support the IV line that would allow her body to receive chemo. She will have to have a port put in next week before she can begin her chemo. There is a real sense of sorrow and loneliness/disconnect surrounding many cancer patients. I was able to give this woman a hug and I have added her to my ever growing prayer list. I am so priviledged to be able to look these men and women in the eyes and say that I understand how hard it is to face this disease. It is a blessing to be able to look suffering in the eyes and not feel uncomfortable. It is a priviledge that is not unique to those of us who are suffering.

I am so comforted by your prayers, gestures of love and listening ears. It is not a trite and little thing. Offering prayer is wonderful. There are moments and days when my spirits are low and forming a coherent thought is almost beyond me. Those are the times that I know that my dear friends (some of whom I haven't even met, yet) are petitioning God on Dan's behalf and I can rest in the peace that comes from living in a community of believers. I draw strength from knowing that if I stumble that one of you will lift me up and help Dan and me (and all our family) to press forward. I fervently pray that there will be a cure for this and for all cancers. I also know that God has the power to intercede at any time and change all of our lives forever.

Praise God for Dan's "sqeaky clean" MRI!
Love,
Leah (and Dan)

Round 4 of 6 this Friday!

2008-02-11T12:34:00.000-05:00

Dan and Dr. Morris (Hugh) going hunting.

Ross and Dan on the class field trip to Sea World

This week will mark the 1/2 way point in Dan's first cycle of his new chemo regimen. We will take our children to my parent's house on Thursday, Valentine's day, and Dan will receive his fourth round of chemo the following day. This should be a peaceful week. Dan's dad is flying in for a few days and he will be able to spend Friday with Dan at the cancer center. It will be nice to have Bob here.

Dan was feeling well enough to go hunting with his friend, Hugh, this past weekend. Hugh is one of Dan's former clients, and has been a dear, true friend and advocate over the past 7 months. I wasn't worried for a minute knowing that Dan was in good company for a restorative weekend away. (It didn't hurt that 1/2 of the men hunting were orthopedic surgeons--I figured that the odds were pretty good that Dan would return safe and sound.)

Both of our kids were sick this past weekend (in fact, they are still home today). God's providence is evident in all things, though. I was able to get the children on antibiotics 24 hours before Dan returned home! Hooray!!! Now, if I can only get them well enough to return to school things will really be on track.

My mom sent me an article from the Vero Beach newspaper about a man who had a quick wedding on a hospital helopad after being diagnosed with GBM. He decided that he wanted to formalize his long-time relationship with matrimony now that he was facing the "end of his life." It was written as a feel-good story and talked little about the diagnosis. I was amused and saddened by the concept that this man and woman had waited so many years to enjoy the true commitment of a sacred covenant with one another. For those of you who don't already know, I will give you a brief synopsis of what having a GBM entails. I will also take a minute to give you our personal "take" on this disease...

GBM is also known as Glioblastoma Multiforme, it can be a primary or a secondary brain tumor. We happen to have the primary (a level IV--the fastest growing). If left untreated, GBM patients usually die within 3 months. With treatment the odds increase to a median survial rate of 12 months. The average GBM patient is between 45-70 years old. Most patients suffer from seizures, motor loss, memory loss, mood and personality loss, headache, nausea, loss of cognitive functioning and visual loss. These are the ugly stats and facts that we were given seven months ago.

Dan and I were devastated. We were overwhelmed with the little hope that was offered. Like the man who married (in the above-mentioned article) we grasped at ways to try to put our lives into perspective and derive meaning from the chaos. Since then, we have begun to hope for more than just time. We have begun to build new dreams for our future and we have found doctors who believe that a cure is just around the corner. We have faced the potential for death and have decided that we would rather hold onto the truth of life. We know that God loves us and didn't give this disease to our family. Rather, God knew Dan before he was born. He knew that Dan would face this awful disease. He created each of us uniquely to be able to live with this trial. He gives us the strength to face and find joy in each new day. He gave us special family and friends that were created to help us through this trial. In the end, whenever that comes, God will welcome us home. It is our fervent wish that we are able to look Him full in the face and he will say to each of us, "Well done!" Until then, we depend on all of you to help us keep our feet firmly on the path of hope.

I just wanted to give you all the opportunity to know how amazing my Dan is. When I was told his prognosis, I was all but defeated. Danny's strength and determination are infectious. He leads our family with true grace and courage. As we approach Easter I ask for your prayers of praise and thanksgiving that we have not become a statistic. I know that many of you have been praying continually. Thank you. We live on those prayers and we grow in them. Please remember our extended family in your prayers. I think that in many ways it must be harder for them, being away with those ugly statistics hanging around. We are doing amazingly well and we are incredibly grateful for where we are today.

Lots of love,
Leah (and Dan)

Chilling on a Saturday...

2008-01-26T08:29:00.000-05:00

Dan and Ross fishing in downtown Celebration

Dan and his mom, Susie!

Hello to all!

I am sitting at my new computer on a chilly Saturday. (Chilly for Florida, that is.) I know my sister and brother would say we are a bunch of wimps. They live in Chicago and Indianapolis, respectively. The other day my brother told me that it was 1 degree in Indy! That's cold! It's days like today that make me appreciate the mild winters in Florida.

My new computer is a 24-inch 4 gig i-Mac that I purchased after seeing my friend Terri's computer. Terri came over the other day with her new i-Mac and I fell in love with it. One cord! That's all there is to this computer. Everything else is wireless or built into the monitor. It is truly amazing. This machine is so easy to use compared to my PC that I can't believe I didn't switch earlier. The internet is a great way to feel connected to others when you don't feel up to going out.

All is going pretty well given my situation right now. This round of chemo is a lot more aggressive than the last one. The side effects are about 3-4 times more intense than the Temodar by itself. With the Avastin thrown in I 'm getting a lot of nosebleeds which is new. The nausea is way more pronounced than before. Fortunately, as always, if I stay on top of my meds I can manage these bad feelings. It's just when I get behind that I start to feel lousy.

The house is now officially on the market and so far so good. Thank God we have an incredible agent who is working very hard for us. Jimmy Tate will truly earn his money on this house when he sells it. That means a lot coming from me who was 100% commission income for 10 years! We have already had several showings and some offers and a lot of interest. Thank you, Jimmy for taking such good care of us.

My mother is in town with us this week and we have really enjoyed her company. She arrived last Monday and will be going home tomorrow, (Sunday) Boo Hoo! She, as usual, has been a force to been reckoned with. She has been helping Leah with the cooking, laundry and cleaning. With my appetite being the way it is right now it is nice having my mother cook for me again. Moms always seem to know what we want and when we want it. We will miss her tremendously when she returns home.

Other than that, we continue to ask for your prayers and hope. We appreciate all the meals and everything y'all have done for us to date.

love,

Dan and Leah

I.V. Chemo Round 2...

2008-01-18T15:47:00.000-05:00

Dan finding out that he is finally able to go home from chemo!

Ross turns the big 5!

Dan is resting comfortably here at the cancer center while he receives his second round of chemo-cocktail. This entire experience is a tremendous exercise in patience. We arrived at the hospital around 11 AM and we have at least 3 hours of treatment still to go (it is currently 4PM). Luckily, my mom and dad offered to take MK and Ross for the weekend, so we are able to sit back and "relax" knowing that they are having a BLAST in Vero! It is amazing how in the midst of chaos God's perfect plan unfolds to those who have eyes to see.

As I wrote in our last post, we have experienced a lot of change over the last few weeks. Our decision to opt for a total healing (as opposed to symptom treatment which would merely keep Dan relatively comfortable while the cancer was allowed free range through Dan's brain) requires Dan's full-time energy and attention. Consequently, Dan is no longer able to work with his company. Dan's new full-time job is to heal. We have been blessed with good insurance and a wonderful support team which will allow for me to remain at home to care for Dan and the children during this time.

We put the house "on the market" this week and it has been a whirlwind! Dan and I were a little confused when it seemed like roadblock after roadblock stood in the way of listing our house when we felt so strongly that we were being led to move to Vero. On Monday morning, in the midst of absolute chaos (no understatement), a friend of ours happened to drive by while Dan was outside trying to get his phone to work. This friend, Jimmy, is one of the men who worked tirelessly to finish the playground for our children. Anyway, long story-short, he is now our realtor and he is a dynamo!!! While we are here at the hospital, he is at our house filming a virtual tour (to ease the showings while Dan is home healing) and he is also showing our house to a potential buyer...what a blessing!

I took a quick snap-shot of Dan that I will try to add to this post when I get home. Please continue to hold him up in your prayers. Our lives seem so unbelievably complicated right now, but we continue to trust in God who loves us and holds us in his hands. Dan and I take great comfort in our faith. One passage that I come back to over and over again is Philippians 4:4-7:

Rejoice in the Lord always. I will say it again: Rejoice! Let your
gentleness be evident to all. The Lord is near. Do not be anxious about
anything, but in everything, by prayer and petition, with thanksgiving,
present your requests to God. And the peace of God, which transcends all
understanding, will guard your hearts and your minds in Christ Jesus.

I continue to pray for and give praise for each of you. Our journey is not isolated and apart from you. It is yours as well. We love you!

Many blessings,
Leah (and Dan)

New Year, New Chemo, New Hope, New Home!

2008-01-07T12:31:00.000-05:00

Dan and the kids Christmas Eve

Dade City on Christmas Day

We have been a bit tardy in our posts, but our lives have been moving at warp speed while our energy reserves are somewhere between cryogenesis and hibernation. This year brings a lot of changes for our family.

Dan started his new chemo regimen this past Friday. We spent 7 hours at the cancer institute while Dan was "hooked" up to the new chemo cocktail. His new treatment will be every-other Friday for 12 weeks. It was almost like starting all over. The other patients who shared our day (2 men with brain tumors) were veterans. Both of the other men received their treatment through ports in their chests, while Dan was able to still just use an IV line. It was an oddly exhausting day. I never thought that just sitting still could wear you out, but it can.

Dan has been able to cope with the new "cocktail" without too many side effects. We knew that we were facing a more rigorous regimen, and we are prepared to deal with that. As you all know by now this is an EXTREMELY aggressive form of cancer and Dan and I are facing it with a hope of total healing. We know what the statistics say, but we refuse to give up hope by not even entering the fight. I am so proud of Dan.

As our lives continue to change direction at such a fast pace, we have decided to do some major simplification for the duration of Dan's healing and treatment. We are going to move to Vero Beach to be closer to family and we are sending the kids to a school that is right down the street from our new home. It was a tough decision, but we have surrendered the idea of controlling our own futures. We have prayerfully decided to go where God is leading us and this is the "healing sabbatical" that we need right now.

Thank you for all of your continued prayers and support. We are praying specifically for total healing, for a reduction of chemo side effects, for Dan's body to be able to continue to function healthfully, and for peace.

As this battle moves forward we become better equipped in many areas. We are incredibly blessed by you, our support network. My dear friends here in Celebration know that cooking is my "weak spot" and it is amazing how the girls just show up with meals on the days that I am overwhelmed. Thank you. Food is such a wonderful way to show nurturing love for each other. It makes us feel very loved. It is also amazing to see posts when we need encouragement and phone calls when we need support. You all are the hands and feet of Jesus to us every day. Thank you!

Love,
Leah (and Dan)

Back From Duke!

2007-12-12T07:41:00.000-05:00

Dear All,

Well, we arrived back from Duke last night and all is well. My in-laws took great care of our kids and Leah is off driving carpool this morning. It is amazing to me how one can travel off to a different state and then in the blink of an eye go right back to normal routines. Well, enough of that.

Our visit at Duke was very good and informative. We got to meet the famous Dr. Friedman and all his wonderful staff. Our first appointment was on Monday at 12:00pm at the Neuro center. Yes, these people work right through lunch. They rotate their eating time so someone is always on duty. Also, they have a sign in the waiting room that states if you have been waiting for more than 20 minutes, tell the front desk. I was very impressed by this as I have waited in some doctor's offices for more than an hour and then no apology from anyone! We waited for maybe 10 minutes before we were called back. The first thing that was done was my vitals. They took my height, weight, blood pressure and pulse. We were then sent back out to the waiting room for maybe 5 minutes before we were called back in. This time we got to meet Dr. Friedman's personal P.A. who was fantastic! Her name is Antoinette and we went over pretty much everything. She discussed my diagnosis, which was reconfirmed. Leah and I were both hoping that maybe Florida Hospital messed up their diagnosis and I did not have GBM IV. I had to have the pathology lab at Florida Hospital send the slides of my tumor to Duke for this testing. Duke wanted 15-20 unstained slides plus, "1 H&E recut from each block and immuno slides." At the time of my surgery when my tumor was removed they did a frozen section, or a biopsy, of my tumor. Apparently they kept some on hand for further testing. This is what was sent to Duke for further analysis. Duke, in their initial letter to us, stated that they had been known to disagree with other pathology reports, so we were a little hopeful for an initial screw up. Oh well.

We then discussed the Duke plan of action for Dan Sams. They feel very strong that mixing up the chemo medications is the way to go. Dr. Friedman's opinion is that these cancer cells will eventually get used to the Temodar, (my current chemo drug) and will quit responding to it. He wants to keep the body guessing and mix up the medicines. This is a philosophy I am very familiar with. It is the same with exercise. With a weight training program your body will eventually stop producing results if you do the same program day after day. You have to mix it up and keep the body guessing as to what is going to come next. Same with cancer and chemo. Also, Duke has discovered a drug that has been used for awhile to treat other types of cancer and is showing great results with brain tumors. This drug is Avastin and works by cutting of the tumor's blood supply or essentially starving the tumor of what it needs to grow and reproduce. The only problem with Avastin is that it is not F.D.A. approved for brain tumors. This is why my local oncologist has not been able to prescribe me this treatment. Working with Dr. Friedman, my local doctor can now help me receive this drug that I need so badly.

The new chemo will be a little tougher than the Temodar. First of all, it is a true chemo in that I will have to sit in a chair for 5 or so hours every 2 weeks to receive the medications. The first medication they will introduce will be the anti-nausea, Zofran. Next will be the new chemo, called CPT-11. Then, after all of these are introduced comes the Avastin. This process will be repeated every 2 weeks with a duration of 12 weeks total. At the end of this cycle I will have another MRI and then travel back to Duke for further analysis. This whole process is scheduled to start on January 3rd after another MRI that I will have on December 31st. The MRI in December is for what they call a "clean baseline" to compare future films against. Also, the new chemo, CPT-11, is known to have some pretty nasty side affects. I won't state them here, but patients have been known to feel pretty bad for a few days after the introduction of the meds.

The general plan would then call for another chemo to be introduced for another 2 cycles with another MRI and then another trip to Duke. After that we would return to the Temodar for another cycle and so on so forth. The idea is to mix up the Temodar with the Avastin and these other 2 chemo's for a rotation of what is 3 cycles. Temodar is the first chemo, CPT-11 is the second and the third I can not remember the name of. I think it was CCNU or something like that. The Temodar calls for 28 days, (5 on with 23 off) the CPT-11 calls for 6 weeks, (1 day on for every 13 off) and the other chemo we do not know what the timeline is going to be. We will find out when we return to Duke in 12 weeks. I will start the CPT-11 with the Avastin on January 3rd and stay on this regimen for the next 12 weeks. Yee Haw!

Anyways, after speaking with Antoinette for awhile we got to meet Dr. Friedman. What a guy! He was like a bundle of lightening that stormed into our exam room. He was dressed very humbly in a pair of worn jeans and a casual cotton I-Zod type shirt with tennis shoes. No white doctors coat or anything to denote him as someone special. His hair was a little disheveled but the sparkle and intelligence in his eyes was very evident. He spoke at about a million miles per hour but was easily understood and made his points clearly. We got so caught up with him that we forgot to ask him some important questions we had. I have since sent him an e-mail and am awaiting his reply. He basically went over his reasoning for switching up the chemo's and asked me what kind of insurance I had. When I told him, he asked if I would have any problem going on 60 Minutes with him if my insurance refused to pay for the non-FDA approved drugs. He said that 60 minutes was his show of choice for stuff like this. Wow! I like this guy! Anyways, he wrapped up by asking if we had any questions, which after the 60 Minutes comment we didn't, and he left. Antoinette came in shortly after and we finished up our office visit. All in all our first day at Duke took about 3 hours and we left feeling very good and positive about the future.

The next day was not nearly as exciting but was still very informative. We met with a great social worker and a nurse. Leah and I enrolled in 2 studies, me to find the cause of GBM IV and Leah to determine the amount of stress that the caregiver goes through during this process. I was very surprised to learn that the caregiver stress level is 2-3 times that of the actual patient. If that is true we should all pray very hard for Leah over these next few months. I can't imagine that amount of stress being experienced by one individual. I know how much I feel on certain days and to think that my wife is 2-3 times that is very hard to comprehend. God bless you, Leah. I love you.

We arrived on Tuesday at 8:30am and we left around 12:30pm. We were talking with the brain tumor staff the whole time. Oh yes, I forgot to mention that day 2 took place at the Preston Robert Tisch Brain Tumor Center, which is actually in the basement of the same building we were in the day before. They are hoping to get their own building some day, which I will vouch for they need. (It was a long walk to the bathrooms from the Tumor Center.) When we left we went back to our hotel and packed and checked out. After eating lunch is was time to return the rental car and go to the airport.

I meet with my local oncologist this Friday to map out our treatment plan for the future. I am looking forward to getting under way with this new treatment. I feel positive about halting the growth of this cancer and getting back to being 100% healthy. I continue to pray for total healing and thank all of you who have stuck by my side. God bless you all!

Love,

Dan and Leah

MRI results and off to Duke

2007-12-07T13:08:00.000-05:00

More Cruise Photos!

Dear Friends,

Dan started Chemo again yesterday and is resting comfortably as I give you all a quick update. We received his MRI films yesterday and spoke with his doctor on the phone last night. There were no visible tumors and what could be interpreted as some progression might be a side effect of steroids.

You are probably wondering if this is a good thing or a bad thing (I know we are). The truth is that we don't know right now. One of the blessings of this type of brain cancer is that it doesn't spread through the body. This also makes it hard to detect. There is no blood test that gives us any answers. The only way to confirm anything is to get tissue from the brain, and since getting a sample of brain tissue is not a good idea (unless you are already there to remove a tumor) we just can't be sure of anything. At this point time will tell.

We leave on Sunday for Duke and we are greatly comforted by your prayers for healing, pain relief, reduction of chemo side-effects, travel mercies and peace beyond all understanding.

As you can imagine, this battle for healing is evolving on a daily basis. It is incredibly important for Dan to be mentally peaceful in order to provide his body with the optimal environment for immune boosting (i.e. cancer fighting). As we complete this first week of Advent we are filled with the hope of new life. Prior to Dan's tumor we were taking many of life's blessings for granted. Today we are renewed with a sense of wonder and excitement every day. Don't get me wrong, there are days that it feels like the very air that I breath is too thin to sustain me, but those are the times that good and faithful, loving friends and family swoop in and surround us in their love. We are never alone!

Lots of love and may the blessings of this Christmas season fill you with hope,
Leah (and Dan)

Back From The Cruise...

2007-11-27T11:28:00.000-05:00

Hey everyone! We have returned and are just getting settled back into the routine of our life and wanted to touch base with all of you. Today is Tuesday the 27th of November and I will be leaving shortly to pick up my father at the airport. He is coming in town to stay with us until Saturday and we are very excited to have him here. We had a wonderful time on the Disney cruise and Leah's folks were great to us and the kids. A big thanks to Lionel and Kathy for taking us on this cruise and for helping out so much during the voyage. I had just finished a round of chemo before we left and was not feeling 100% during the trip. Lionel and Kathy really stepped up and assisted Leah with the kids when I was down. Thanks a lot, Lionel and Kathy.

The details of our cruise were as follows; We boarded the boat mid-afternoon on Saturday and sailed around 4:30pm out of Cape Canaveral towards Key West. We arrived in the Keys on Sunday and boarded the Conch Trolley Tour and toured the largest island of the Keys, Key West. After we were done with the tour we strolled around and did some shopping. (Leah and Kathy shopped while I ate some conch fritters.) Then it was back on the boat for a full day at sea on Monday to arrive in the Grand Caymans on Tuesday morning. We boarded a tour bus and learned the history of Grand Cayman before arriving at a Sea Turtle Farm. We spent the majority of the day learning about Turtle's and other sea creatures. The kids got the attention of our tour guide early and were given special treatment during the entire tour! (Which they absolutely loved!) Ross and M.K. got to hold some Sea Turtles and then were able to snorkel with them in a special swimming area. Of all of our shore excursions I think this one was the best. We spent about half the day at the Turtle Farm before it was time to get back to the boat. From the Grand Caymans we sailed off towards Mexico. Mexico unfortunately did not work out so well. We had to catch a ferry style boat from Cozumel toward the mainland and Leah ended up getting seasick. She was O.K. once we get her back on the boat and rested up for the remainder of the day. After Mexico we had another full day at sea which was relaxing and nice. Friday was spent at Disney's private island in the Bahamas called Castaway Cay. We rented some inner tubes and rafts and spent almost the entire day in the water with the kids. Lionel and I spent the majority of the time resting on the beach in lounge chairs. It was great! Saturday morning we were at breakfast at 6:30am and off the boat by 7:45am. We arrived back in Celebration by 9:00am and we had even picked up Toby at the kennel! All in all we had a fabulous time together as a family and really enjoyed the holidays.

This week is going to be nice with my Dad here. We will use this time to get a Christmas tree and decorate with the kids. Next week I am scheduled for my M.R.I. on Thursday morning. I will also start my next round of chemo that evening. (Yee Haw!) Then we travel to Duke on Sunday for our 2 day appointment on Monday and Tuesday with Dr. Friedman at the Preston Robert Tisch Brain Tumor Center. Please continue to pray for us as we are still not out of the woods yet. We are very hopeful for some good news from Duke. We are also praying for a clean scan on Thursday morning. Thanks to everyone who has continued to pray for us and we love you all.

Sincerely and with love,

Dan and Leah

Moving Ahead

2007-11-05T13:46:00.000-05:00

The race is over and we are starting to return to a normal state of affairs. The last of our family who flew in from out of town returned the following Tuesday after the race. We had a lot of friends and family who came for the race and we appreciated all of the support that was given. The raced turned out to be a lot of fun for all who participated. The majority of the runners did the 6.5k, but I would like to give a special congratulations to those who ran the 13k. These crazy individuals include my brother-in-law Sean Kelley, my cousin Carla Danielson, neighbors and friends Bryce Servine, Sean Kane and Emily and Ross Moore. Those who ran the 6.5k were Amy Lowell, Al Arce, Jeff Pifer, Diann Lowe, Brian and Kristin Merrill, my sister Tracey Kelley and of course my lovely wife Leah Sams. I would like to extend a special note of recognition to my wife and sister who have never run a race before in their lives and were not sure they would be able to finish this one. Leah and Tracey ran together and did a fantastic job of finishing the race! I would also like to say thank you to those who came and cheered us on. These people were Rob and Terry Zollinger, Kim Haynes, Mellissa Pifer (not able to run due to a knee injury), Caroline Kane, Kathry Arce, Will Danielson, Ashley Servine, and Eric and Erin Ericson. Thanks to everyone who came about and supported Team Dan!

Today is Monday and I have been feeling O.K. for the last few days. I start the next round of chemo this coming Thursday (the 8th) and continue for the next five days finishing the treatment on Monday. During my last chemo treatment I got a terrible head cold right on the same day I received my medication. Although I got a Z-Pack, I still had the symptoms for about 3 weeks! Unfortunately, Leah and my son Ross got the same cold a few days after I did. We were a household of joy for a few weeks! My point in telling you this is that I have no idea how the chemo is going to affect me. Everyone asks me how I feel during the chemo process. The answer is that I do not truly know yet. My friend Dion told me that he really did not feel the chemo until he was almost done with the treatment. I am suspecting, based on what Dion has told me, that I will experience the side effects sometime toward the end of day 5. What I expect are fatigue and nausea.

I see Dr. Nick this coming Friday to finalize everything for our Disney cruise and our trip to Duke in December. Apparently with the Disney cruise I am supposed to have all of my medications on me in their original containers. I do not think that Disney knows I take about 10 different medications a day that equal about 40-45 pills a day. That should be a fun bag for security to go through! For Duke I am supposed to gather a lot of medical information that only Dr. Nick and a lab out in California called OncoTech have. Apparently Dr. Freidman and his staff want to look at the original frozen section of my tumor that was taken during the surgery. I also had to fill out a lot of paper work for my medical work up. This was all done via e-mail, thank God! (I received about 10 different forms that were a few pages each!)

As we approach the date for the cruise we are growing very excited. I am looking forward to some quality time with my family that I feel I missed on our original cruise. During our first Disney cruise I was not right in the head due to the tumor. I was sleeping a lot, and when I was awake I was not myself. (Little did we know at the time that I had a golf ball growing in my brain.) Some quality time with Leah and the kids and my in-laws is much needed at this point in my life. I still thank the Lord every day for answered prayers and continue to pray for total healing. I know what has happened so far could not have happened without His help and guidance. Thanks to all of you who still pray and think about us. We love you and look forward to hearing from you soon!

Love,

Dan and Leah

The race is on!!!

2007-10-25T20:17:00.000-04:00

This is a photo of Dan, "Dr. Nick," and Dion!

Dan and I are so excited about the Tower of Terror race this weekend! We are having a "pep rally/open house" this weekend for those of you who want to stop by before the event. We are going to take photos and just give Dan a boost of encouragement. Please feel free to stop by for a quick visit between 3-5 pm. Unfortunately, due to the importance of keeping Dan as germ free as possible, we are trying to limit the number of small children (and adults with colds) here at the house. Please help us keep Dan healthy!

For those of you who are running, don't forget to pick up your race packet at Pleasure Island Motion on Friday from 3-8PM or Saturday from 10AM-4PM. There are party tickets still available for those of you who just want to join in the fun.

This weekend is so special to us. Dan set this date months ago when we needed something to work towards and it is exciting to finally be experiencing it. Family and friends from all over the country will be here for the weekend.

Last weekend was another milestone for us. Dan and I were able to meet with Dion and his wonderful wife, Sofie. They took time out of their family vacation to sit down with us and share their GBM 4 battle experiences. For those of you who are new to our journey, Dion is a GBM 4 survivor (6 years from diagnosis/tumor removal). He and Dan met through divine intervention. Dion has mentored and encouraged Dan throughout this process. This past Monday, Dion had his annual MRI and it came out clean (praise God)! Dion and his wonderful wife are a huge source of encouragement for us.

I look forward to seeing many of you on Saturday. I will post photos as soon as I can.

Lots of love,
Leah (and Dan)

Going To Duke!

2007-10-17T07:46:00.001-04:00

Hello friends and family! A lot has happened since my last post so here it goes. First of all, because of my association with the Tug McGraw Foundation I was contacted by none other than Dr. Henry Friedman from Duke University. He called me the Monday after my M.R.I. around 10:00pm! My caller i.d. showed the number as Duke Hospital so the man was still working that late at night! Talk about a workaholic! Our conversation was very short and to the point. He commented that I had a "...beautiful resection..." referring to my surgery. He then asked who my Oncologist was, whom he knew. (Dr. Nick) He then stated the exact protocol that Dr. Nick had already prescribed and said that he did things a little bit differently. (Dr. Nick has prescribed Temodar only and apparently Dr. Friedman likes to use what is called a 'cocktail', a mixture of Temodar with some other chemo and auto-immune drugs thrown in.) We then talked very briefly about my medical past and current situation. Dr. Friedman then said it was time for me to decide if I wanted to be a patient of his. He asked me to contact his office when I had made my decision. We were off the phone before I really knew what had just happened. I consulted Leah very quickly and called Dr. Friedman back directly. He answered the phone and I told him I wanted to be a patient of his. He answered, "Very well. I will set it up. Goodnight." That was it. Wow! I had just become a patient of the Preston Robert Tisch Brain Tumor Center at Duke.

In case you don't know how significant this is, I will tell you. First of all, Duke is considered the top brain tumor center in the world. When I first received my diagnosis I was told there were three centers that were the best in this particular field. Sloan Kettering in New York, M.D. Anderson in Houston and Duke in Durham. Of these three Duke is considered number one. Leah and I talked with Dr. Nick about this before I even started my initial round of chemo and radiation. The problem is that none of these centers will see you until you complete what is considered the, "Standard Quality of Care." (This is the first 6 weeks of chemo combined with radiation. Apparently every center across the U.S. treats this tumor in a very similar fashion for the first phase.) After the 42 day program you get your M.R.I. and send it for review to the program or programs you want to become a part of. If you are contacted and accepted, you get to go. I know for Duke the criteria was very specific. The tumor has to be a primary brain tumor, no metastatic brain tumors. (Sorry, Lance. You wouldn't be allowed. For those of you who don't know, Lance Armstrong's tumor was not a primary brain tumor. His tumor came from somewhere else in his body.) They also want operative reports, discharge summaries from the hospital, chemotherapy treatment summaries, radiation therapy summaries and my last 2 or 3 lab results! But wait, that is not all! They also have to confirm my pathology! Apparently this entails contacting OncoTech out in California who has my frozen section from the surgery and obtaining slides of my tumor. And, lastly, they want my last two M.R.I.'s for review. Whew! What a list! The good news is we were accepted and have appointments scheduled for December 10 and 11. The two day appointment looks very thorough. We will spend about 3-4 hours each day meeting with Neuro-Oncologists, Physician Assistants, Nurses, Social Workers, Child Life Specialists and any other specialist who may be able to assist Leah and my family.

Initially I was worried about confronting Dr. Nick with the news of a second opinion. I just met with him yesterday and he was wonderful. He informed me that there were only a few centers across the U.S. who's opinion he respected and that Duke and Dr. Friedman were one of those. He went on to say that Duke has a lot to offer that Florida Hospital does not as far as experimental treatments go. Dr. Nick feels it is a good idea to keep Duke in our back pockets should some of the programs they offer become necessary. As upsetting as that sounds, it is the unfortunate truth. Just because I had a clean M.R.I. does not mean this battle is over. I am fighting a war with this cancer that is going to have many individual battles over the course of the next few years. The fact that my new chemo regimen is prescribed for 2 years is indicative of how serious this is. As I have said before, we are not out of the woods yet but we have found the path that can lead us there.

Dr. Nick does want to meet with me as soon as I get back so we can discuss some of the treatment options that Dr. Friedman recommends. He plans on remaining my doctor which is exactly what I was hoping for. I think Dr. Nick is wonderful and incredibly smart. I value his opinion very much and still remember that night in the hospital when he actively came in and sought me out as his patient. Even in my morphine haze I still remember that night, although I also recall drifting off to sleep as he was explaining to me the nature of my condition.

Now on to other news. I just completed my first dose of my second round of chemotherapy. I received the Temodar on Thursday of last week ironically the same day that I began to feel the symptoms of a bad head cold. Luckily Dr. Nick took mercy on me and prescribed me a Z-Pack which I began the same day as the chemo. I can't tell you how this second round affected me because I felt the cold so badly. I was sleeping all the time! Where I normally get up between 5:00 and 6:00am I was sleeping until 9:30am! I felt like a slug! During the second phase of my chemo the dosage has been bumped from 165mg to 445mg! I took my last dose on Monday night so the 23 day wait period began on Tuesday. I will start my next round of chemo on November 12th. Sometime after November 17th I will be scheduled for my next M.R.I. During that month, we will be taking a Disney cruise to focus some time with the children. I am assuming that I will have the M.R.I. sometime after I get back. Part of the new secondary treatment is a M.R.I. after every second cycle. Do y'all have any idea how uncomfortable one of those machines is to get stuck in for a half hour every two months? Now I know what a sardine feels like getting stuffed inside of that can. Not only that, but the machine is VERY noisy during the exam. Also, technicians expect you to be absolutely still during the test! Very frustrating!

Our family continues to do well. I am very excited to see the U.S.F. bulls ranked by the BCS standings as number two in the nation. This is where Leah and I met and fell in love. It is very ironic to me that this cancer has changed my life as much as it has. A lot of people think that what I have is terrible and they are right. This cancer could ultimately take my life. But what it has done for me since my diagnosis I would not trade for anything. I have a whole new perspective on life, God, family and happiness. My priorities are completely different from what they used to be. Quality time with those I love means more to me now than ever before. My relationship with God means more to me now than ever before. I can not wait to get out and see the world with my family and make memories that will last a lifetime. Thank all of you who have been so kind through all of this. Your kindness and understanding have been appreciated. God bless all of you.

Love,

Dan and Leah

Round 2

2007-10-08T15:11:00.000-04:00

Leah's Bible study group in "Team Dan" gear!

Dan couldn't have a sweeter cheering section! (Can you believe these beautiful women have 18 children between the 5 of them.--They really know what it means to be patient and persistent!)

Go Team Dan! "Be strong!"

Happy Monday!

I have been quite remiss in my posting duties, but I truly didn't know what to write following Dan's own words. He is such a source of strength for me. I have been blessed and humbled by being able to see what he chooses to share on this blog site.

Dan's battle with cancer is far from over, but he is steady and strong. We will not know what the "shadow" on the MRI is for at least another month. It could be radiation effects, surgery residue/scar tissue or cancer. Dan starts chemo this week, so please pray for the chemo to really penetrate and eliminate any residual cancer cells.

We spent the weekend in Vero Beach with my family. It was restorative to be with with my mom and dad. They got up with the children each morning and gave Dan and me a chance to just enjoy each other. Sunday morning we went to Trinity Episcopal (my childhood church) and it was like coming home. The priests and the congregation there are so "on fire" with the Holy Spirit that it is just amazing to worship with them. We really had fun visiting with many of the wonderfully faithful friends that have been lifting us up in prayer over the last few months...Thank you.

Many people have asked me how Dan got his tumor. We don't know. Somewhere around 95% of all people with GBM's don't know how they got them. There are warning signs to look for which include: headaches, which can be most severe in the morning; nausea or vomiting, which can be most severe in the morning; seizures or convulsions; difficulty thinking, speaking, or finding words; personality changes; weakness or paralysis in one part or one side of the body; loss of balance; vision changes; confusion and disorientation; and memory loss. Different parts of the brain control different functions, so symptoms will vary depending on the tumor's location. If you are having any of these symptoms go to the ER and get a CAT scan.

Dan and I feel very blessed to have been reminded about the temporary nature of life here on earth and we appreciate each day that we have with one another. We are living each day to the fullest. Like a good steward, Dan has taken many reasonable precautions to ensure for the welfare of his family. The one that I appreciate most has been the fact that he has proclaimed his faith in Jesus. I cannot imagine facing the trials that come in this temporal life without the assurance that Dan and I will have eternity together. Our faith not only gives us the hope of eternal life, it gives us the hope for total healing. Healing comes in many forms. We praise God for the gift of healing Dan and we humbly ask, that if it is in God's will, that Dan will be free of cancer as well.

Lots of love,
Leah

Just so that you can see the type of support that we have here (in Celebration) I am going to add a photo of my women's Bible study. I arrived last Monday to see the ENTIRE group in their "team Dan" gear. I have heard rumors that the staff of the Fitness Center here in Celebration had another "team Dan" dress up day. I will add that photo when I receive it!~L

Fridays Appointment

2007-10-01T09:22:00.000-04:00

Hello to all! As many of you already know we received a report Thursday night from Dr. Nick's wonderful nurse that my M.R.I. was clean. That was wonderful news! I had the best nights sleep I have ever had in a long time that Thursday night. The next morning at 10:30am we sat down with Dr. Nick to go over the results of the M.R.I. and to plan out the next phase of my treatment. (We also had a lot of questions for Dr. Nick which he dutifully answered.)

The first thing Dr. Nick said was congratulations on the M.R.I. scan. Just that morning he had a conference with the other Neuro and Oncology Doctors from the area and one of the cases they discussed was mine. Dr. Nick showed my pre and post M.R.I. scans and the whole group was in agreement that I was responding very well to the first round of treatments. One of my scans did show a small area of white density around the tumor site that was a bit of a concern. Dr. Nick explained that this area could be a low grade tumor or a "hot spot" from the radiation. He felt that the next phase of treatment could eradicate this troublesome spot.

The next phase of treatment will start as soon as soon as I receive my Temodar in the mail. (Temodar is my chemotherapy drug.) For the first round of treatments I was on 75mg per meter squared which equaled 165mg each day. For the second round of chemo they are going to bump the dosage up to 200mg per meter squared which is about 2.5 times the initial dose. (Which roughly equals 412.5mg.) The big difference is that for the second round of therapy I will be on a 28 day cycle. The cycle will consist of 5 days on for every 23 days off with a M.R.I. every second treatment. This will continue for 12 to 18 treatments as tolerated by my body. So, as soon as I receive my meds I will begin the chemo and take it for 5 days. I will then stop the Temodar for 23 days and have an M.R.I. and then go back on the chemo for another 5 days and repeat again...You get the picture. This will continue for about another 2 years. (Again, as tolerated by my body and without the need for surgical or radiation intervention.) We have no idea what the side effects of such a massive amount of chemo are going to be. I can tell you from the first round of treatments that the nausea and fatigue were no fun. I would expect the same if not worse from the second round.

The chemo is the ideal situation, though. If I remain on the chemo it means that the cancer is not growing. I do have the possibility of a regrowth at any time. That is why I am getting M.R.I.'s every 2 months. Dr. Nick did say that my tumor site was approachable with surgery. If I did have a recurrence they could go back in and take out the tumor a second time. A lot of people with brain tumors can't have operations. So although the idea of chemo for 2 years sounds like a bummer, it is the best situation I could be in.

We never posted the numbers before, but GBM IV is very deadly. My initial prognosis gave me about a year to live. Believe you me, when you hear news like that it's as if someone has gut punched you. My entire world flashed before my eyes. The first thought I had was for my wife and children. I couldn't imagine leaving my wife a widow and my children fatherless. I can say that I reprioritized my life in a hurry. When you are given a year to live, it really changes the way you view your life. Now that we have gotten over the first phase, though, my chances for survival have greatly increased. Although we are not out of the woods yet, we have found a path that can lead us there. For the first time since July I can eat salad and undercooked meat again. In 3 weeks I can stop taking the steroid that makes me so irritable in the mornings. For the time being I don't have to make the trips downtown Monday through Friday. The news on Friday was very good. God is definitely good and healing. I still don't know what his plan is with me, but so far I can say that I am blessed. I feel very humbled and fortunate to have the life that I have. I will enjoy it to its fullest.

God bless all of you!

Love,

Dan and Leah

GOOD NEWS!!!

2007-09-27T16:43:00.000-04:00

Hooray! We just received a call from Vanessa (Dr. Nick's nurse and our earthly angel), and Dan's scan looks good! Both the radiologist and Dan's neuro oncologist agreed that on preliminary readings things are looking good for us. PRAISE GOD!

We had just composed a joint email asking for prayers for peace and patience when the phone rang (5:20 PM). Our wonderful medical team stayed on late to give us this news! This means that the chemo and radiation have been effective in retarding (if not stopping) the growth of Dan's cancer. Any time that we have together is precious, but this gives us a real chance to take a deep breath and not think about cancer for at least a few weeks.

We will meet with Dan's doctor tomorrow to discuss our next phase of treatment. We know that he will receive chemo on a 23 days off, 5 days on schedule, but we think that he will not need the gamma knife treatment at this time!!!

This is such exciting news for us. Of course, this is the end of phase I, but for now we can tally the score as Cancer-0, Dan-1! Thank you prayer warriors and support team. We know this is going to be a long fight, but it sure feels good to be on the winning side for now. We are offering up huge prayers of praise and thanksgiving!

Lots of love,

Leah and Dan

Monday In Beautiful North Carolina

2007-09-24T07:29:00.001-04:00

Hello everyone! It seems like a long time since our last update. We are now in the gorgeous mountains of Highlands, North Carolina. Highlands is located just above the town of Cashiers about two hours outside of Atlanta, Georgia. As I write this message the weather outside is close to the 50's and DRY! During the day it never exceeds 75 degrees. It feels incredible up here. (Too bad we have to come home on Wednesday.)

The kids, Leah and her parents and I are having a wonderful time. We have hiked up Whiteside Mountain, had a picnic lunch up on Sunset Rock and gone trout fishing with Grand Daddy. (M.K. and Ross have each caught 2 fish! We will post the pictures once we get back home.) I am actually sleeping in for the first time in a while. I still wake up early but I am able to go back to sleep up here. (Must be the lack of responsibility and chores that I have at home.)

My last radiation treatment was on Thursday morning at 7:30am. We promptly hit the road and arrived in Buckhead around 4:00pm later that day. We stayed at the InterContinental Hotel and had a wonderful dinner at the french restaurant located in the lobby. The next morning we slept in and had breakfast at the Concierge's Lounge before proceeding on to North Carolina. The trip from Buckhead to Highlands only took about 2 hours and we got to have lunch with our children and Leah's parents at the Wildcat Cliffs Country Club.

As I said before, our time up here has been amazing. I truly feel as though I am able to rest and heal. When I get back my M.R.I. is scheduled for Thursday morning at 6:30am at Celebration Health. They tell me I should be able to get the results back by the end of that day. I am going to ask for my own set of films just to see if I can see anything. If there are "hot spots" in my brain they will show up as white spots on the x-rays. Hopefully I will not see any of those. I am also going to be sending this second set of films to a Dr. Friedman up at Duke University. This is the gentleman who is associated with the Tug McGraw foundation. He is considered the top brain tumor Oncologist in all the world.

I have been signed up for the Gamma Knife procedure in case the M.R.I. shows something. Apparently most patients in my situation have to undergo this secondary procedure to erase as much doubt as possible concerning the eradication of the tumor. The Gamma Knife is very precise pinpoint radiation that targets the cells on a microscopic level. It is supposed to be VERY intense from what I hear. I will be fitted for a new mask that will be tighter than the first one. (I was sent home with my first mask after my last treatment. Graduation gift?) The thought of being refitted for a new mask is a little frightening. Remember the scene in Alien when the man is attacked by the egg laying parasite? That is the mental picture in my head concerning the fitting of the mask.

Y'all are probably wondering how I am feeling. I am surprised at the level of energy I have been able to maintain. All of the personal testimony I heard from those who have been here before, (even the same doctors and the same protocol) say that the last 2 weeks are very rough. I was even told to expect side effects from the radiation for up to 6 weeks after the treatments end! (Radiation side effects include but are not limited to loss of smell, loss of taste , loss of hair, fatigue, headaches, etc...The radiation basically fries everything.) Although I have experienced some mild appetite loss, (I have lost a total of 10 pounds since I came out of the hospital) and taken a few naps, the only real problem I've had are the headaches. The headaches are nowhere near as intense as they were before, though. The only fear I have concerning the headaches is that the tumor is back. I am told that what I am feeling is my brain swelling from the radiation. It is sometimes hard to ignore the fact that my head is still hurting like it is, though. These headaches I suffer toward the end of the day are in the exact same location as before. Besides the headaches, though, I am feeling really good. My appetite is still a bit off and I do suffer the occasional fatigue, but for someone in my situation I think I'm doing great! The refreshing mountain air and the time with my family has been wonderful.

Leah and I are still praying for total healing. We are very hopeful going into this M.R.I. and feel confidant that the results will be good. We miss all of you very much and look forward to seeing you again. As far as the backyard play gym, all I have left is the porch roof. Thank you so much to Jimmy for helping as much as he did during the last day. Thanks to Eric as well for helping complete the set during the week. Everyone has been so wonderful to us during this time and we appreciate all everyone has done. Thank you!

With love and blessings,

Dan and Leah

2 Days 2 Go!!!

2007-09-18T19:45:00.000-04:00

We now have a slide!!!

The perfect rainbow (taken from our front porch).

We are still missing the swings (we are on step 75 out of 99).

I can hardly believe that we are 2 radiation treatments away from the end! Dan and I will not know what to do with ourselves without that trip to the cancer center each day. If you have to get radiation, the Cancer Institute is a wonderful place to go. The staff treat us like family and we have grown very fond of the patients who share our general appointment time. The doctors are more like buddies than anything else. It is fun to sit and visit with other cancer patients and their caregivers. We all get excited when someone "graduates" from treatment, or gets a port removed, or gets their radiation dose lessened. I have to say that if you want to hang out with some pretty remarkable people, hang out at a cancer treatment facility. Most of the people you meet will have their priorities in order (or they are actively looking for a way to do it).

Danny is out in the yard working on the playground with his friend, Erec, as I compose this blog. I just took a couple of photos that I will add. This playground will be better built than our house. The directions say that it takes 2 moderately skilled individuals to put it together. The directions fail to mention that the 2 moderately skilled individuals will be master craftsmen by the time that the project is completed. Tomorrow we will get in a 13 foot magnolia to try to block the mega playhouse from street view.

As you can tell from our playground, Danny doesn't do anything by halves. He attacks every project (including his cancer) head on. Dan is pushing through these last few days of treatment with the same intensity. He has had to take some afternoon naps, but all in all he is astoundingly tough. I know that he is looking forward to some real rest and healing over the weekend. Our prayers for this weekend are specifically for the chemo and radiation to have been effective and for God to use Dan's body at a cellular level to destroy any of the cancer that may have been left behind.

Thank you for your prayers for travel mercies. Danny's parents made it safely to Odessa, and my parents and our children arrived in Highlands this morning without a hitch. Danny and I will head up the road on Thursday following his "graduation" from radiation.

Dan and I have spent our time together (without children) discussing the many blessings in our lives. We are so appreciative of all of you. It has been humbling, to say the least, to see your posts each day. There have been many early morning hours that were warmed by the gift of your written words. We even go back to the beginning and re-read your messages on really hard days. Thank you.

Lots of love,
Leah

P.S. It is now 9:30 PM and construction crew #2 has arrived! ("Thank you," Erec & Jimmy)~L

The Home Stretch

2007-09-15T20:05:00.000-04:00

"Thank you," Tim, Shel, Roger, Jimmy and Mark for working ALL day on phase I of the playground--what a great job!

Dan and his buddies spent the entire day building a playground for our children. I am so appreciative!!! The playground is wonderful. It is located right outside of my kitchen and living room windows where I can watch the children play while I "work" inside the house.

I know this was a HUGE sacrifice for the men involved as well as their families. As a wife and mother I realize what a gift of time they all gave---Thank you!

This was a wonderful week. Dan's parents came in from Texas and brought a great big dose of energy with them. As usual, my mother-in-law has been cooking, cleaning and generally nurturing up a storm. She has not only made meals for us, but for some of our friends as well (can you believe it?!?). Susie is a real miracle. She is a cancer survivor herself! Bob, Danny's dad and best buddy, has been a loving and peaceful presence in our home. We are really blessed to have them as parents.

I hope to fill you in with an update again on Monday. That is when we anticipate the completion of our playground. It is also the day that the children leave for N.C. with my wonderful parents for a little holiday while Dan finishes up his first round of radiation (on Thursday). Susie and Bob will be headed back to Texas on Monday as well. We are asking for prayers for travel mercies for our whole family on that day. As always, we appreciate any prayers offered up for total healing for my dear Danny.

As we near the end of the active treatment, the anticipation of Dan's next MRI is beginning to increase. This is a BIG deal. It will be the determining factor in our next phase of treatment. Ideally, there will be no cancer/tumor growth on the films. If so, then he will progress to the 23 days off treatment followed by 5 days of intense chemo and radiation schedule. If the cancer is back, then we will hit it with the big guns.

What ever the MRI shows, we are OK. We trust that God loves us and we trust that his perfect plan surpasses our limited understanding. We praise God for his many gifts, especially for this time that we have today.

Lots of love,
Leah (and Dan)

1 WEEK TO GO!

2007-09-14T05:18:00.000-04:00

Hello everyone! Today is a beautiful day! I am sitting in my office right now with a cup of coffee in front of me and the house is completely quiet. This is a good time for me to catch up with all of you. My folks are in town this week which has been a wonderful blessing. We went to Sam's club yesterday and waited for over an hour for the staff to bring us a backyard play set for the children that we are going to build on Saturday morning. Besides that being the most painful test of my patience everything is going well.

On the last day of my treatment the Cancer Center has moved my radiation to 7:30 in the morning. Any driving volunteers? Just kidding, we are actually going to that session packed up and ready to go to North Carolina for the week. My wonderful In-Laws are arriving at our house on Sunday of this weekend to take our gorgeous children up to the mountain on Monday morning. We will be childless all week! I am not sure what we will do with ourselves but I bet we can come up with something. The last day of treatment my Father-In-Law has reserved a room in Atlanta in a very fancy hotel. We are so excited! We can't wait to have a night to ourselves in a high end hotel in downtown Atlanta. Thank you Lionel, thank you Kathy.

As far as the radiation and chemo goes, I was told by some very reliable people (the last two folks I wrote about) who had gone through my exact same treatment to expect to feel really lousy the last two weeks. I'm just not there yet. I ate four meals yesterday! I have only lost about 8 pounds since this has all started! Don't get me wrong, I still get bad headaches and fatigue in the afternoon, some days I don't feel like eating very much at all, but overall I think I'm doing really well. My blood work for my immune system has come back good from the beginning. (Thanks to Dion for the holistic medicine recommendation.) Does that mean I'm due for a delayed reaction? I have no idea. If I do get wiped out it will hopefully happen while I'm recovering in God's country, the beautiful mountains of North Carolina. That reminds me, I have not been to the North Carolina in over 6 years. I had been so busy at work I could not take time off to be with my family in the mountains. That is just another reminder of how messed up my priorities were before my diagnosis.

If y'all have been looking at the guestbook you have probably noticed an outpouring of my fraternity brothers from college. I would like to commend my Brothers from my chapter and say thank you for being so awesome! I even met a friend of a brother who is going through a very similar experience that I am. He is located up in New York and is receiving treatment at Sloan Kettering which is one of the three top brain tumor centers in the U.S. I would like to add him to our prayer list, he has a family and his name is Matt. Please specifically pray for his total healing and that his treatments are good to him. If all I got from the contact with the brothers was the ability to reach out to one individual, that would be great. That is not all I got, though. My brotherhood is an amazing group of men. This has been a reminder to me of why I joined a fraternity; a lifetime of friends and love. My spirits were a little down when the brotherhood contacted me. I felt lifted up and cared for. The way it happened was a bit bizarre. I bumped into on of my brothers at an Indian Princess's sign up. After we met, within literally 3 days, I received almost a dozen posts from the brothers. I do have to publicly thank Jimbo for posting a link to our alumni website and sending out the e-mail that made the brothers aware of my situation. Jimbo, thank you very much.

Well, the kids are about to wake up and get ready for school so it is time for me to sign off. I can't wait to get to the mountains and see God's work first hand. I know it will be a wonderful place for me to heal and feel His presence. I love all of you and thank you again for you continued love and support. God Bless!

Dan and Leah

P.S.- I just got the best snuggle from my son as he came down to say good morning. God Bless the little ones!

4 Weeks Down, 2 To Go!!!

2007-09-09T05:41:00.000-04:00

Dan and Ross building a model airplane--(Thank you for the materials and idea, Jeff!)

The kids in their "Team Dan" gear

Friends and Family,

It seems like every one of my posts starts off with an apology, so I will I try to avoid that here. We have had a tough week this last time around. Nearing the end of my treatments has become difficult. I was told that the chemo and radiation have a cumulative effect on the body. Boy, whoever said that was right. Apparently every 5th radiation treatment, (after my brain gets a double dose from the mapping) the amount of radiation is increased. As of this coming Friday I will be at my highest dose of radiation ever. If you look closely at my head I have a tan line from the treatments. I also have a radiation burn on my forehead which tends to look pretty crispy by the time Friday rolls around. At first I thought it was really lousy that Florida Hospital would take the weekends off from treatments. Now I see the need for it!

I broke down for the first time on Thursday of last week. I woke up that day at 2:30 in the morning and could not go back to sleep. I know many of you suffer from the same problem I sometimes get. I call it racing brain. I wake up at some ridiculous hour in the early a.m. and my brain just starts going a 1,000 miles per hour. Try slowing that train down! The bizarre part is that my body and mind are not tired at that point in the morning. It is not until the time I need to be productive that I get tired. (Figures, right?) I missed taking the kids to school so I could attempt a few more hours of sleep. When Leah returned we started to talk and it just poured out. I have not let go like that since all this began back in early July. When I was initially given the news of my diagnosis my mother and Leah were both there with me. I felt I had to remain strong for them. When I eventually sat down with my counselors I felt I had to remain strong for him/her. (All this male macho crap was taking a toll on me.) I would have moments of tearing up when I read some of your posts, but this was Niagra Falls. I felt like a little baby. I don't know why I shared that with you, I just felt I needed to. The Lord is sometimes speaking to me in strange ways, I feel as though this is one of those times.

The children and Leah all seem to be doing well. I am doing more than I ever have with my family which is VERY nice. Last week I took the kids to school all but one day. I have become involved in after school activities which is very cool. Monday Ross and I start t-ball practice and on Saturday Mary Kathryn and I signed up for Indian Princesses. I am going to use this time that God has given me to the best of my abilities. I have felt like the absent father for all of my daughter and son's life. I know it is time to get involved.

It is amazing the support group of family and friends that we have. We are never lacking for food, rides, fellowship, babysitters, play dates, etc. All of y'all are amazing people and we love you. Tomorrow both of my parents arrive for the whole week. Leah and the kids and I can't wait to see them! My mother tends to come in and take over and we let her. It's awesome!

I once again feel very blessed with my current circumstance. I know that sounds crazy but it is true. I don't think anything short of a malignant brain tumor would have changed me so much. The hardest part will be the waiting at the end of my treatments. I will not have a conclusive MRI until two weeks after my last radiation treatment. The reason for this is apparently I will have "hot spots" from the radiation in my brain for awhile after the treatments are over. Oh well.

Thanks to everyone again for your love and support. We need it and love it and miss every one of you. Thank you so much for being there for us. You make us feel special. Thank the Lord for his blessing's and love upon all of us. I pray daily for all of you and for all of us.

Sincerely, with love,

Dan and Leah

Hello! A Special Homecoming

2007-09-03T05:53:00.000-04:00

This is a photo of Dan coming home from the hospital.

To All,

I would like to start by thanking all of those who have once again been so helpful to Leah and I. We have had several people help out with drives down to treatments, meals, and carpool for the kids. We also would like to thank all of those who are praying for us. I truly feel as if I am in Gods hands now. I sometimes feel lousy from the side effects of the chemo and radiation, but besides that, I feel really good. I don't know what brain cancer is supposed to be like, but I feel better than I did before my diagnosis.

I have to tell y 'all that my surgeon is a complete stud. All the research I have done puts a huge part of my final outcome at the hands of the surgeon. (I have been doing a lot of research over the past few days.) The complete and successful extraction of the tumor is incredibly important for the survival of a patient with GBM IV. I have seen and read the films (MRI and CT scans of my brain pre and post op, that means before and after surgery for you non-medical lingo types) to the best of my ability, (which is actually pretty good because of my medical career) and the tumor looks to be completely gone. I never experienced any of the potentially disabling side effects from the surgery. I have read a lot of testimonies from other patients in my same circumstance and they all seemed to have a rough experience of some sort or another. (Multiple surgeries, bad side effects from surgery, infections, etc.) My road so far has been a very smooth one.

The months leading up to my diagnosis were not pleasant. Back in early February I started having what I thought were panic attacks. I saw a doctor for it who prescribed Xaniax for me. Unfortunately, the Xaniax probably masked a lot of my symptoms from the tumor. (The area where my tumor was growing affected anxiety, moods and emotions.) After a period of time I began to see a counselor for my emotional detachment at home due to what I thought was stress associated with work. The stress at work was and is real, (ask anyone in our industry and they will tell you) but it was not causing my lack of emotions. That again was apparently the growth of the tumor. It was not until I started having the devastating headaches that we knew anything was truly wrong. The final straw was a headache that lasted for 3 days and would not go away. The day I checked into the Celebration ER I could tell that the Doc there did not really believe me. It took a CAT scan which showed the golf ball sized tumor to convince him that I was telling the truth! That night we were checked into the ICU at Celebration Health and had a MRI for the final determination of the tumor. (The MRI was for final diagnosis and size and location, which ended up being 5cm and frontal left lobe.) We were told Sunday evening around 11:30pm that I would be having emergent surgery for my tumor by the neurosurgeon who was on call that night. The day of surgery would be Tuesday because the surgeon needed 24 hours to reduce the swelling in my brain and to get me ready for the procedure. (Cardiac clearance, surgery work up, etc.) Leah and I both were trying to seek a second opinion and were told by the hospital that there was no time. If I did not have the surgery on Tuesday I would be dead within 24-48 hours because of the tumor rupturing in my brain. (Apparently the rupture of the tumor is what caused my final headache that settled in for 3 days.) Luckily I had found out by 9:30am on Monday morning that I was in VERY good hands. My surgeon was considered the BEST neurosurgeon in all of central Florida. (Celebration Hospital had hired him to elevate their status in their neuro department.) I have since given him a much higher status as the best surgeon PERIOD! I was bumped to the first case on Tuesday morning and prepped for surgery. Part of the prep was being told that I may wake up to partial paralysis on the right side of my body and limited or no ability for speech. Great! That was uplifting to hear. At this point I asked God to please watch over me and my family and to not make me a vegetable during the surgery. Actually, what I really prayed for was healing and to provide for my family and to please guide my surgeon's hand.

I remember nothing of the surgery except waking up in recovery and being very disoriented. Leah was there and I reached for her hand with my right side and pulled her down to whisper in her ear. I initially thought that my surgery had been aborted as I was being put to sleep. It took me awhile to figure out that the tumor had been removed and I was still in Celebration Hospital. (I had some sort of dream that I was transported to another hospital and then had a bad reaction to the anesthetic and was not operated on.) It startled Leah that I was able to grab her hand and talk to her. Then I was telling her that they didn't get the tumor and some other gibberish that she did not understand. As I was transported back to my room, I realized that I was still in Celebration Health and then I saw the "turban" bandage on my head and had a feeling that the surgery was a success. It was a still few hours until I came to the full realization that the tumor was removed and everything had gone well. It would not be until the following Thursday that I would be given the full diagnosis. Apparently, poor Leah knew the day of my surgery what we were up against. For right or wrong my surgeon had instructed her not to tell me until I asked. I was on some good pain medication for a long time and never thought to ask anyone until I saw my surgeon for my post-op up check up. That was when I was given the tough news about the cancer. I was told that I had to wait for about 4 weeks for the swelling to go down from the surgery before they could start my treatments. I was concerned that during that time the cancer cells would grow and start to infiltrate my brain. My concerns were not justified, just me being a bit paranoid.

I have come to terms with my cancer since all this has started. Once you are faced with your own mortality your life takes on a whole new meaning. I have finally fully committed myself to our Lord. I have put my life in His hands. As I have shared with y'all earlier, I feel His hand in my life in almost all that I do now. It feels divine and scary all at the same time. I sometimes don't feel worthy. I still pray every day for guidance and help. I still pray for others who are in need.

I thank all of you for everything. Thank you so much. We love you.

Sincerely,

Dan and Leah

These are pictures of the kids on their first day of school. Ross is with Danny and Mary Kathryn is with her wonderful new teacher!

Update On Tower Zone Race / Divine Intervention Pt. 2

2007-08-29T09:21:00.000-04:00

To The Runners,

I just got off the phone with Disney and the news is good. Anyone interested in running the Tower Zone Race on October 27 has two options; you must register for the 13k. At that point you can either run the 6.5k or the 13k. The way it will work is the race will have a u-turn for the 6.5k that will take those runners (including me) back towards MGM Studios. Those who wish to test themselves (and get their heads examined, Roger, Carla) can keep going and finish the 13k. Those of us who are sane will be back at the party drinking a cold one and waiting for those who decide to run the half marathon. The only catch is that you must pay the $65 dollars for the 13k. Disney will not reimburse the $25 dollar difference. For those who are interested I have set up a block of rooms at the Celebration hotel. (407-566-6000) What is normally a $200 dollar room they are going to give to us for $160. The tax rates etc. will all be lower as well. All you have to tell them is that you are member of the Sams Party. At this point I would recommend that if you are considering running the race go ahead and register before the race fills up. I look forward to seeing all of you there.

Now to all family and friends,

I had promised another story of divine intervention. Here it goes. Early on in my treatments my brother-in-law, Lionel, had sent me an e-mail concerning a gal in Tampa who had been diagnosed with GBM IV 2 years prior. The E-mail included this girls name and number. I looked at the name and thought that I recognized it but was not sure. I called her up and we immediately began talking about her diagnosis and treatment. (It's funny how those of us with this disease skip the pleasantries and get right down to business.) After listening to her for 5 minutes I stopped her and asked where she had grown up. She immediately asked me, "Is this Danny Sams?" It turns out that she and I had grown up together as kids. This was a very close friend of mine when I was younger. We went to summer tennis camp together and lived in the same neighborhood. We used to be fierce competitors on the tennis courts. When I was able to I used to ride my bike over to her house to hang out. Talking to her now and knowing what she was going through blew me away. I could not beleive that this girl I had grown up with and I share the same prognosis. And to know that she is 2 years out and doing great! She is a true inspiration to me and keeps my spirits up on days when I get to feeling down. I still thank Jesus for putting these people in my life. If there was ever doubt about this being a God thing it was gone.

Anyway, time for me to go and get ready for my treatment. Love to all of you!

Dan

I'M BALD!!!

2007-08-27T19:23:00.000-04:00

Hello all! Well, as the title states, I am bald. Last Wednesday my head started to really itch. I began scratching my head in earnest and then realized a large area was losing hair! The spot in question was where I receive the majority of my radiation. I get hit with five blasts of radiation that focus on the area where my tumor was. (This area is left frontal lobe.) I had always said that when I lost a little, all of my hair was going. As soon as I was able, I had Leah shave the rest of my head to even things out. (Take a look at the pictures.)

I know that I had promised what I consider to be stories of God's hand at work. Here is one for you. When I had my initial consult with Dr. S, (who is my radiation oncologist) the first thing he said to me was, "Could you have picked a worse tumor?" Now, imagine my reaction. This is the man who is going to be in charge of my radiation therapy for the rest of my life. He already sounds defeated. I am not liking his attitude. I am sure he saw the look of anger start to cross my face because he immediately states, "...but I've got a patient who is living in Texas who is 6 years out and doing great! He is a lot like you. Young, energetic, triathlete, positive attitude, hope, etc." Now, all that is true except for the triathlete part. I ask Dr. S to go on and he says that this individual had the same tumor I did, received the same treatments I am about to start, and is now 6 years out and very healthy and active. Wow! Great news! I almost forgave him for asking me the question about "choosing" my tumor.

Well, 2 days go by and I see a post on our guestbook from someone who identifies himself as a, "brother in brain cancer survivorship." He goes on to explain who he is, what he is doing, and oh, if I would like to contact him, here is his e-mail. I couldn't believe it! This was the same gentleman that Dr. S was telling me about a few days before! I fired off an e-mail right away and at the end ask him how he, in Texas, heard about me and our website. (I initially thought that Dr. S had contacted him and asked him to contact me.) On his reply, said gentleman informs me that his sister knows a girl who knew my cousin at Ohio University. Holy smokes! Talk about the hand of God! Not only is it totally cool that I get in touch with a 6 year survivor, but he also recommended several alternative medicines that I am currently taking that are probably the reason my immune system is doing so well. This individual is the main reason I signed up for the Tower Zone Race. He convinced me to have a focus and goal in mind during my treatments so I did not get down and out. I have had several phone conversations with this friend and have really enjoyed his upbeat attitude and spirit. As a matter of fact, he and his family are coming in town on October 18th and staying on Disney property. (He is coming back for his annual MRI with Dr. Nick and Dr. S.) We plan on getting together and comparing our scars. (Just kidding.)

This whole story really gave me the goosebumps. When I post next time I will share another story that is equally incredible. Praise Jesus, I see his work every where I look now.

As for me, all is going as expected. My side effects are present but manageable with medication. Being half way there is a big blessing. I want to thank everyone again who have helped us out in so many different ways. We are still receiving several meals a week which has been great. I even had some very good friends steal my truck on Sunday and detail it! I have had several people drive me down to my treatments so the burden is taken off of Leah. All in all, everyone has been truly wonderful during this time and I thank all of you. Those of you who keep signing the guestbook, we love your comments. Keep them coming.

As for the race, I contacted Disney a week ago and still have not heard back. I called several times today and got nothing but voicemail. I did find out that the 13k and 6.5k start at the same time in the same location. The 6.5k just stops at a halfway mark. If I can't get Disney to respond, my thoughts are that we will just begin the party a little bit sooner. Is everyone good with that?

Well, I am going to sign off for the night. God bless all of you and we love you.

Thanks again.

Dan and Leah

1/2 Way There!

2007-08-26T06:52:00.000-04:00

Dear Friends,

This week will mark the middle of Dan's chemo/radiation regimen. I feel like this is a crucial point for reflection and prayer. We have been enveloped in wonderful fellowship over the last three weeks. It has been such a blessing to our whole family.

I have been taken aback by the strength of Dan's treatments. Of course, we want to annihilate this cancer! We are praying for the chemo to target the cancer cells and for Dan's healthy cells to remain so. We are praying for the radiation to be pinpoint and precise (sparing the healthy brain and destroying the cancer).

Sunday is my favorite day of the week. We focus on our family in order to strengthen ourselves for the week ahead. It is a day of rest! The chemo is 7 days a week, but the radiation is only 5...believe me when I say that a body couldn't take more than 5 days without a rest. I am praying that this weekend allows Danny to heal and rejuvenate in order to face the battle again on Monday.

The radiation only takes about 10 minutes (except for Wednesday which is about doubled for mapping purposes). Dan goes into the "vault" at 11:45 and is usually out by noon. If God puts it on your heart to do so, this would be an awesome time to ask God to really direct the treatment efforts and to strengthen and protect Dan.

Thank you all so much for your posts, cards, phone calls, meals, outings and prayers. Thank you for opening your hearts, cupboards and homes to us. As we face the week ahead it is impossible not to be anxious over the possible side-effects, but we do not have hearts of fear, and we lay our worries down at the feet of Jesus. We are able to see the power of God in the perfection of his plan, the strength of Jesus in the sacrificial love of our friends, and the peace of the Holy Spirit filling us and preparing us to enjoy each day as it comes.

Happy Sunday!
Leah

The Race Is On...

2007-08-21T08:25:00.000-04:00

(Make sure to look at the comments area at the bottom for future race updates. A link to this thread appears on the right side of the page under LINKS.)

Hello! Some of you have already heard the good news. Disney is having a race on October 27th for the Leukemia and Lymphoma Society. The race starts at 9:00pm and has a party afterwards with access to a few rides at MGM Studios. (Click here to register for the race.) I contacted the Tug McGraw Foundation last week and asked if I could raise money for their foundation. (The Tug Mcgraw Foundation is a Glioblastoma IV specific foundation based out of Duke University. Check out the link for more info.) They were delighted! They even went so far as to offer sponsoring me for the race! So far several of my family and friends have signed up for the race. (Unfortunately right now the only race available is the 13k but i am attempting to get us in the 6.5k.) Duke University is one of the three best brain tumor centers in the U.S. A lot of incredible and groundbreaking research is being done there. Thank and God bless all of you.

I have started my third week of treatments and so far so good. I am experiencing some mild side effects but all is manageable with proper medication. (Sometimes drugs really are a God send.) We have had a solid week of family in town which has been a lot of fun. Our house feels somewhat empty after all of the adults and children have gone. Thanks to all who continue to keep touch and stop by and drop off food, etc. Your generosity has been wonderful. I know I promised some stories about divine intervention but with the race info that will have to wait until my next posting. (This one would have been done sooner except Comcast was down all day yesterday. Sorry)

Once again God bless you all and please keep praying for total healing! We love you!

Dan and Leah

<Team Dan gear now available!
(Dan mentioned that he was going to do a shirt for the race so I put one together for him. Once I found a site that could print shirts on demand I just added a bunch of their other items. This is just for fun and is not a fund-raiser of any kind.
- Lionel)

Sorry For The Delay...

2007-08-14T07:39:00.000-04:00

Dear Friends and Family,

I am sorry that it has been so long since my last post. We have been very busy recently. I have had people ask me what I do with my days now that I am not working as much. Just for the record, I am still doing some consulting and office work on a part time basis. I do plan on going back to work for Stryker once I get this cancer in remission. Even without my work, though, Leah and I have had a lot of family at the house lately. If you know about my family, they are all from out of town. (the exception being my Grandmother who lives in Sun City and is not able to come to Celebration, so we go to see her) When they are here for a visit, they stay with us in our apartment. For example, last Saturday my aunt, cousin and cousin's wife and children all came for a visit. My sister and brother-in-law and their 2 children arrived a little bit later. (see photo) My aunt and cousin left around 4:00pm and my sister and her husband are here at the house until early Thursday morning. My brother and his wife will be coming in the following Friday for the weekend. We also have planned visits from my old college roommates, and other cousins and assorted family members. Please, do not misunderstand. We LOVE the attention. I am just trying to make excuses for my laziness.

O.K. The first week of treatments are over and done with. All things said and done, they went well. The only problem I have had so far was and is the chemo and my head. If my anti-nausea meds were off, I feel the chemo in a bad way. I don't feel like I am going to vomit, I just feel bad. My head is a bit strange. I do not have the headaches like before, but my head still has moments when it hurts. (usually toward the end of the day) The pain, I think, is still from the surgery. All I can is thank God for good meds!!

I have begun my second week of treatments and all is good so far. I had blood work done on Monday and I met with my radiation Oncologist. The blood work is to determine what the levels of my anti-seizure meds are (I haven't had a seizure, this is just preventative)and also to check my white cell count as well as my platelet levels. Radiation is going smoothly. I get to play my own music during the treatment. Thanks to my brother-in-law, Sean, I have 6 great CD's to choose from. (I am currently listening to a live Widespread Panic CD)

Thanks to everyone again for all your prayers and support. The next time I post I will share a story of the Lord's hand doing incredible things for me and Leah. I could not imagine going through this experience without believing in God and his son Jesus. I have had so many divine experiences that one would not be able to explain by coincidence. To walk this journey without faith would be a very lonely walk.

Love and prayers to all!

Thank you,

Dan and Leah

Dan's Daily Dose...

2007-08-10T05:14:00.000-04:00

Thank you Thursday--again!

2007-08-09T19:04:00.000-04:00

Dear Friends,

Dan and I are simply in awe by the outpouring of love, support and nurture that we have received this week. We haven't had one need that has not been met. Our children have not had one hour that they weren't in loving care. Our bodies have not had one day without nourishing food lovingly prepared. Our needs for fellowship have always been met. God has not left us and neither have you. Thank you.

This has been a busy, topsy-turvy week for us. I think that we will hit our stride soon. The only thing that we have come to expect is the unexpected.

Wednesday was Dan's first day of full treatment. He is doing well, but we were both a bit surprised by the strength of the medicine. I guess it was a bit naive to think that this would be a walk in the park. We were kind of thinking that it would take a few days/weeks to "feel" the effects of the chemo and radiation. Not so. It is POWERFUL medicine.

Dan seems to be managing his medication a little better today. There is a large learning curve with all of this. In fact, we sat down with our patient education coordination nurse today (try to say that fast). She gave us a lot of practical help and information.

Dan was able to smell the ozone as the radiation was being administered today and see the "lights" in the radiation machine (apparently not all patients can do this--we are assuming this is good?!?). The tech seemed a bit surprised that Dan could do this. Any info out there?

As I sign off for the night, I leave you with this comment from a new friend, a 6-year-survivor of the same grade/level tumor, "the treatment is needed to give you an edge, but God's miracle (you) is the only thing that can beat [your cancer]."

Thank you, again,
Leah (and Dan)

After The First Treatment...

2007-08-07T19:57:00.000-04:00

Hello to all! Thanks again for reading this blog and signing the guest book. We love reading your posts. The last few days have been amazing! Leah and I spent quality time with our children and we have had some great visits with friends. I actually got into the gym yesterday and today! (If any of my Doctors are reading this, please ignore that last sentence) Thanks to all who have brought us snacks, desserts and dinners. I am told the last 2 weeks of chemo are going to be difficult. Apparently my taste buds won't work from the radiation. Weight loss seems to be inevitable and fatigue will take over. Long story short, all the great food being delivered is much appreciated!

I had my first treatment today. I took my anti-nausea medication at noon and then the Temodar (chemo) at 1:00pm. My radiation was scheduled for 2:00pm so we left the house around 1:15pm. Upon arrival at the Florida Hospital Cancer Center we were taken into the back and shown the room were I will be receiving my radiation treatments. (take a look at the picture) I was informed by the technician that today would be a "dry run" were they would map my brain and make sure the markers on the mask were in the right spots. I would not receive any radiation. I laid down on the table and my mask was bolted over my face. (I had a moment of panic as the mask was secured in place) The technicians then left the room and the machine came to life. It started humming and twirling and lights were flashing. I felt like I was in a 1970's disco club. It was at this point that I decided If I did not close my eyes I was going to get sick. (I use the same technique with MRI machines. Just close the eyes...) I became so comfortable that I started to fall asleep! Right as I was about to drift off the techs came back in and snapped off my mask. This whole process took only 15 minutes. Apparently this is the same duration of time the actual radiation will take. We then met up with Dr. S's nurse and went over a few questions we had about the remainder of the week. The schedule for the next 3 days will be as follows; Wednesday is 2:00pm, Thursday is 2:30pm and Friday is 3:00pm.

We ask for your continued prayers and support. Once again, the next 3 to 4 weeks are still good for visits. My last 2 to 3 weeks of treatments are not supposed to be a walk in the park. Feel free to call or leave a message on this site. God bless all of you.

Love,

Dan (and Leah)

Off to treatments

2007-08-07T05:43:00.000-04:00

Dear Friends,

Dan starts his treatments today. I think that he will probably post tonight or tomorrow about the experience. I just wanted to put out a quick request for extra-heavy-duty prayer over the next 6 weeks. I am praying that God uses our gifted doctors, nurses, and technicians to administer healing care to Danny. I am praying that the chemicals and radiation effectively destroy the bad cells and spare the good ones. I am praying that God performs a healing miracle. I am praying for strength and peace to fill my dear Dan. I am praying for you, our friends and family, that you are blessed through your gifts of love, time and devotion.

I praise God for the gift of Dan! I praise God for the gift of today! I pray that we are used in God's will for God's will, "...for such a time as this" (Esther 4:14).

Love,
Leah

Saturday Morning Update...

2007-08-04T08:21:00.000-04:00

Dear Friends and Family,

I meant to post last night but I was not able to connect to the internet for some reason. (comcast does that to us from time to time...) We had a very nice week full of friends and family visiting us at the house. My treatments start on Tuesday and for the first 3-4 weeks I should still be in good shape for visitors. Anyone who would like to stop by, just call the house or e-mail us and we will schedule a time with you.

As many of you probably know, we got news that our beloved pastor Patrick will be leaving Community Presbyterian Church at the end of September. I was heartbroken when I first learned of Patrick's departing. Over the last 5 years Patrick and Kelly have become good friends of ours. I no longer look at Patrick as my minister. I see Patrick as a buddy and someone I am able to confide in. He was with me early on the morning of my surgery and was there when I woke up. He gave me the confidence I needed at that time to get through the unknown of what condition I would wake up in. (the neuro surgeon initially thought that I could wake up to paralysis on the right side of my body with a limited ability to speak)
As the son of a Presbyterian Minister, I can understand what Patrick is going through. Believe me, I will miss him very much as I start my treatments and go through my journey over the next few months without him at my side. We as a church community need to support pastor Patrick from now until his departure. We love you Patrick. You will be missed. We do wish you the best in your new church and will pray for you.

Thank you, Patrick, for all you have done over the last 10 years. Thank you also for leaving Nancy. She is truly a blessing to us.

Sincerely,

Dan and Leah

Good Friends = Great Days

2007-08-02T06:16:00.000-04:00

Dear Friends,

How wonderful is it to read Dan's own words? I hate to even post after him, but I want to honor you and your time by "filling you in" between his powerful posts...

We are taking this week to really enjoy our friends and family. We have just been covered in love!!! Dan, the children, and I are excited to see so many of our faithful friends each day. Thank you for the many gifts that you are all using to minister to our family.

Yesterday, we had a visit from my grandparents, aunt and uncle. They showed up with food, drink and care packages for the children. In fact, there was so much food that I didn't have to make dinner (and we still have enough left for lunch today!!!). While I am talking about food, I must thank the women of our community for the steady stream of DELICIOUS treats. It is so nice to to feel your love through your gift of food throughout the day.

In the afternoon we visited with our gifted associate pastor, Nancy. What a blessing she is to our family!!!

After we put the children to bed, a few of my girl-friends came over to love on us. What fun! Again, my hands were stilled as they showed up with food, drink and conversation. They even brought their own wine glasses and garbage bags (can you imagine?!?).

I was struck by hearing how so many people are reading this post! I was also surprised to hear how many people want to say or do something, but feel unsure of whether or not their overtures of love would be invasive or intrusive. I want to assure you that Dan and I are not the least bit sensitive. There is nothing that you could say or do out of love for us that God wouldn't turn into a blessing for us (because we love him). As Dan's wife, I encourage you to share the burdens that are put on your hearts with him. I see the joy he gets from reading your guest book entries and comments to his posts--and it is tangible.

Well, I am off to be with my family! I wonder what miracles God will reveal to us today? Please join with me, if you are so inclined, in praying for Dan's total healing (whatever that may look like). As one of my dear friends said to me last night, "God doesn't make mistakes!"

Your sister and friend,
Leah

After Seeing The Oncologist...

2007-07-31T16:12:00.000-04:00

Leah and I just got back from a busy day! We started off our morning with a trip to the Radiation Oncologist at the Florida Hospital Cancer Center in downtown Orlando. We had a very nice and informative talk with our Oncologist, Dr. "S". I will start my radiation and chemo treatments a week from today on the 7th. of August. My sessions will be at 10:30am Monday through Friday for about 15-20 minutes at a time. The radiation type is considered to be "skin sparing". I was told to expect gradual hair loss in the immediate area where the radiation will be focused. I was also measured for a lead mask and had ANOTHER ct scan. (that will make 4 ct scan's in 3 weeks!) The process of being fitted for the mask was not what I was expecting. I was lying down on my back in front of the ct machine when the nurse brought down this warm flexible piece of plastic that was pulled down over my entire face. For a second I did not think I could breath! Then I remembered to use my nose and my panic went away. The mask was then pulled very tight and clamped down to the table. The nurses proceeded to push and pinch and mold the mask to my face. They explained that the mask was used to hold my head in place as well as serve as a "shield" from the radiation. The markers were then placed around my head where the tumor was and I was moved into the machine for my ct scan. The best part about this whole procedure is that I got to go back and do it a second time when the mask had gotten hard and molded.

Our next appointment was for the Chemo teaching. We learned that my anti-nausea medication will be taken 1 hour before the chemo. (the chemo is called Temodar and with my height and weight consists of three pills that will total 165 milligrams) The Chemo will be taken 1 hour before my radiation. There is also an anti-biotic that I will take at night on Monday, Wednesday and Friday. Because the chemo will kill the bad and good cells, I have to have my blood taken once a week. (the good cells we are most concerned with are the white blood cells. i.e. my immune system might become compromised) As a result of my delicate situation I have to be careful where I go. I am not allowed to go anyplace where there are a lot of people or where diseases may be widespread. (hospitals, airplanes, etc.)

After the Chemo teaching Leah and I headed to my office in Winter Park to see the guys who work there. We had a very nice visit with Michael, Mike, Mark and Henry. This is the team that has been handling my territory since I checked into to the ER at Celebration Health. Gentlemen, thank you for all you have done and your continued support. We then went to Winter Park Memorial Hospital to see Dr. Hugh and all the staff. This was like a homecoming for me. I consider Winter Park to be my home away from home. Over the last 4 weeks I have missed the crew at Winter Park very much. They are like family to me and it was awesome to see them all again.

I also ran in to the gentlemen who are filling in for me during my leave. Rick and Garrett, thank you for everything you have done since my diagnosis. All your work is truly appreciated.

Once we left Winter Park it was time for lunch at one of my favorite spots, PF Chang's. We got home right around 3:30pm and relieved our babysitter and spent some time with our kids. Tonight Leah is going to an event at the church and I am going out with two friends from work to the Tavern in Celebration. It will be nice for both of us to get out with some friends and enjoy some time out of the house.

Once again, thank y'all for your continued prayers and support. They mean so much.

love,

Dan (and Leah)

P.S. I added some photos of the Birthday weekend!~L

Feeling the Love!

2007-07-29T22:10:00.000-04:00

Dear Friends,

Dan and I are so excited about this week! We started our week off with wonderful worship! Nancy, one of our pastors, shared a FABULOUS sermon on Colossians 2:6-15 entitled, "Where We're Rooted."

In case you are wondering, we are rooted in Christ!

We are prepared for the storms that come our way. Don't get me wrong, we are in awe of the devastation that nature is capable of, but we are also content in the strength of our shelter in the Lord.

***

We had a fantastic weekend full of friends and family. If you are interested in scheduling a visit, please don't hesitate to call. We love to be loved!

On a prayer note...Dan's chemo training (and consequently all treatment) has suffered a delay.--The nurse's daughter was sick last week.--Therefore, we are requesting prayers for all of the people we come in contact with. We ask that God put a hedge of protection around the doctors, nurses, and others who are slated to treat my dear Dan. We are praying for TOTAL healing and to remain in God's will.

I am off to rest, dear ones,
Leah

THANK YOU, Thursday

2007-07-26T19:55:00.000-04:00

What a special day. We really love all of your wonderful posts! First of all, "Thank you," for being our friends.

Today was the day that I hit the wall of exhaustion. Amazingly, Dan has been taking care of me!!! We are so blessed to have each other and y'all. It seems like every time we need to see a caring face, someone comes to the door. Every time I look at the contents of my fridge and my mind starts to fog, another sweet friend shows up with a dish to nourish our bodies and warm our hearts. Some of you have even shown up to help us hang pictures, move furniture and further decorate in order to make our house into a great home for my sweet Dan. Of course, most importantly, you have lifted us up to God in prayer. We are blessed and full of joy!!!

We had a visit with Dan's wonderful surgeon, Dr. Jenkins this afternoon. Dan was very excited to learn that his skull had an almost palm-sized section removed and reinserted (very cool guy stuff). Danny was even more impressed to hear that his head now contains titanium plates (could they be Stryker's?!?). If so, we know they are of good quality!

Lots of love (I think Dan will post again tomorrow!),
Leah (and Dan)

Happy 10th Anniversary Leah & Dan!

2007-07-26T14:46:00.001-04:00

Happy 10th Anniversary Leah & Dan!

Happy 7th Birthday Mary Kathryn!

We love you guys. Enjoy your very special day.

Here's a picture of Dan & MK taken on Christmas '04.

Wednesday Night--Dan's Update

2007-07-25T23:42:00.000-04:00

Hello to all! This is my first update since this blog was started a week ago by my brother-in-law, Lionel. Lionel, thank you for creating such a beautiful web site where we can all come together and share information. As for all of you who have signed the guest book, thank you as well. Leah and I have truly enjoyed all of your messages. I know that I average about 3 times a day viewing the blog site and checking the guest book.

Today was a good day for Leah and I. I will be seeing Dr. Jenkins (the surgeon who removed my tumor) on Thursday at noon. On Friday I will receive my chemo teaching from one of Dr. Nicks' nurses at the Florida Hospital Cancer Center. On Tuesday, July 31st, I have an appointment with the Radiation Oncologist for my mask measurement and head x-rays. I am also supposed to receive all my chemo meds via Fed-Ex on Thursday as well. (yep, my drugs are coming in the mail) It sounds like I am getting four different types of meds that are supposed to last for the first three weeks of treatment.

The chemo and radiation treatments are going to run for 42 days from the time they start. The radiation treatments will run from Monday through Friday and last about 15 minutes to a 1/2 hour at a time. I am supposed to take my chemo pill about 1 hour before the radiation treatments are scheduled. (yes, my chemo will be pill form. no i.v. lines and no port) I will take the chemo pill 7 days a week for the duration of the 42 days. The only side effect that Dr. Nick warned me about is a potential for a compromised immune system and a build up of fatigue as the treatment progresses.

I have to share with all of you that this cancer has completely blown my mind. (literally) I had no idea that when I checked into the E.R. at Celebration Health, that I would be told I had a tumor in my brain. Then, to be told that the tumor was malignant and that I would need chemo and radiation shook me at my deepest core. I have since put my trust in God and asked for His forgiveness and total healing. I feel this is the biggest wake up call of my life. When does someone get a second chance like I have been given? I am going to tackle this cancer head on and fight like I have never fought before. I ask for your support and continued prayers as I progress with my treatments.

Thank all of you again for your messages, prayers and support as I journey down this road.

I love you all.

Dan (and Leah)

Tuesday Night

2007-07-24T22:32:00.000-04:00

What a wonderful day! It is amazing how this experience has blessed us in so many ways. Danny and I have achieved a level of emotional intimacy that reminds me of the day that we got married. I remember Father Coyle telling us to take the time during communion (while we were kneeling before the alter) to just experience the joy of that moment. We knelt there, side by side, touching at our shoulders in silent agreement that we were being knit together by God. It was an incredibly private moment in an incredibly public arena. We felt then, as we do now, the humbling power of the Holy Spirit completely empowered by so many prayers and praises.

We spent the morning walking through the nature trails here in Celebration while the kids rode their bicycles. Mary Kathryn found several seed pods, spider webs, and birds. Ross found a hawk feather and a centipede. It was a simple morning. It was beautiful.

Dan has several Dr. appointments this week. We are also attending a chemo training on Friday. There is so much to learn!!! We still request prayers for total healing, discernment, and peace.

Thank you for your love,
Leah (and Dan)

Monday Night

2007-07-24T00:11:00.000-04:00

It is so wonderful to see all of your entries in the guest book pages. Dan and I read them each night before we go to bed and each morning when we wake up. On the hard days they keep us going and on the easy days they keep up our spirits. Thank you all for checking in with us and being the hands and feet of Jesus on a daily basis.

Dan is feeling great! If you want to visit, the time is now. Please email me or call the house to schedule with us. Next week we begin chemo and radiation, and things may slow down again (or maybe not???).

We are off to bed. Thank you for your continued prayers and support!

Lots of love,
Leah (and Dan)

Feeling Fine!

2007-07-22T23:36:00.000-04:00

We had a wonderful weekend! Mary Kathryn and Ross came home from a week at the beach (with my wonderful parents) full of excitement and energy. It's funny how children help us to view every situation with "truth glasses." They asked us the really important questions..."Did it hurt when they took out the staples?" (No, it is actually really cool...removing a drain is another thing--Don't ask unless you want the long story). "Did they use a stick to fix your headache?" (Ross thinks you can fix anything with a big enough stick)....and so on, and so on...their questions seemed endless. Yet, there is something refreshing about dealing in simple truths.

As for this week, Dan will be fitted for a lead mask/helmet. This will get him all set for radiation treatment. Otherwise, he is still spending time recovering from surgery. Dan's mom, Susie, went back to Texas until September (I tried not to cry when she didn't let me stow away in her suitcase). It has been amazing to have my meals just appear on the table 3 times a day. Not to mention how that I have actually seen the bottom of all 4 of our laundry hampers in one week. All of these unusual events I can accredit to, Susie (ie. "Super Mom").

This is a big week for our family...We celebrate our 10th anniversary and Mary Kathryn's 7th birthday at the same time. What fun!

We are so blessed to have this day. Thank you for your continued prayers and support!

Love,
Leah

Relaxing at Home

2007-07-22T20:49:00.000-04:00

Here's a picture of Dan and Leah hanging out at their home this past Saturday, both looking great.

Update from the Oncologist

2007-07-20T20:08:00.000-04:00

What a great day! Dan, Susie (Dan's mom) and I went to see the oncologist this morning. We spent over an hour listening, learning and asking questions. Since the tumor was malignant, Dan will be treated with chemotherapy and radiation to control the malignant cells. Dr. Nick has "curative intent" in regard to Dan's cancer.

Because of Dan's unusually fast healing and total body health, Dr. Nick considers Dan's prognosis to be completely unique. In light of that, we are asking all of our "prayer warriors" out there to pray specifically for total healing.

We were so encouraged by our visit with Dr. Nick, that Dan took us out for lunch at the cafe!

Tomorrow, Mary Kathryn and Ross will come home from their beach vacation!!! We are excited to see them and just BE with them. I will try to post some updated photos over the weekend to give you all a look at my dear Dan. I intend to keep him to myself (and the kids...and the grandparents) until Monday. Please feel free to send me an email if you want to schedule a visit next week.

Otherwise, I am signing off until Monday or so.

Have a great weekend and, "thank you" for your prayers...God loves them and so do we!!!

Love,
Leah

"Zipper" Removal

2007-07-19T22:32:00.000-04:00

Dan got his staples off today!!! He feels better (less pressure). We have had an exhausting day in terms of information overload. We have a meeting with our oncologist tomorrow...that should help us to get a road map in this sea of information.

Please continue to pray for healing, pain relief, wisdom and discernment. Also, please pray for Mary Kathryn and Ross (our children). They return home (from a week at the beach) on Saturday. They are such a blessing to us!

Love,

Leah

Opening Message from Leah

2007-07-17T23:23:00.000-04:00

Dear Friends and Family,

I am writing to more of you at one time to avoid repeating myself (which can get confusing). Please feel free to respond to me through email whenever you wish. Also, feel free to forward this to anyone that I might have missed. I do not have everyone's email address, so if this gets forwarded to you, drop me a reply. It is much easier for me to answer emails than phone messages, because you would probably not want me to return you call when I actually have time (late night and early morning).

Danny is recovering from his surgery with astounding speed! I will attempt to attach a photo of Dan's new hair-do ("Thanks" to Rob Z. for the cut, and Roger R. for the photography!!!). If the photo actually makes it, you will see Dan's strength for yourselves. He is the very picture of health. Other than a tiny microscopic amount of cancer left in his brain that the surgery could not remove, he is fine. Brain cancer is not like other cancers. It cannot live outside of the brain itself. So, it cannot spread throughout Dan's body! We are praising God that there were no complications from the surgery itself. Once Dan physically heals from having the surgeon rooting around inside his noggin, then Dan will be exactly like he was before the surgery. He will feel fine and healthy and ready to "play" with his friends. Until then, because his healing is so important to the next stage in this battle, his momma, Susie, and me are a just a bit protective (he is a big dude and we might as well keep him to ourselves as long as we can hold him down). The doctor wants us to limit visits to a couple a day and less than 15 minutes in length. Keeping that in mind, we are really asking everyone to wait until next week for visits (unless there is a burden on your heart to see him sooner). Between taking care of practical matters (our refrigerator died again yesterday--but was finally fixed before bed) and making doctor's appointments, Dan is getting way more stimulation than would be ideal.

I promise to let Dan out for "play-dates" as soon as I can (just kidding about the play-date part...if any of you tell him I wrote that...I know where you all live!!!).

Yes, we did discover that the tumor was cancerous. That just means that Dan will have to undergo chemo and radiation. Due to his unusually good health, we have every possible treatment option available to us. Please pray to God: (1) To continue to heal Dan from the surgery and for the pain to lessen and go away completely, (2) that we all have good discernment and wisdom this week, (3) that God puts the right people and options in our path and that we are humble enough to recognize them for what they are, (4) that all of our hearts are softened during this time so that God can mold them into dwelling places for the Holy Spirit, (5) that we do the work that God created for us to do with peace and joy!

My dear brothers and sisters, none of us know how many days we have on this earth. Not you, not me, not Dan. Please share in our joy of today. Let go of your fear. Let go of your control. Those things just a waste our collective energies and dull our minds and hearts. God created each of us with gifts and purpose. We were each created for such a time as this. I pray for each of you as your sweet faces cross my mind. As your names touch my heart I am praying that God will reveal himself to you in the midst of this journey. I pray that he will strengthen you and give you peace beyond understanding.

Dan should get his staples out on Thurday and we meet for our first "sit down" with the oncologist to discuss our action plan on Friday.

I am off to do the work that God prepared for me.

Lots of love, your humble servant and friend,

Leah

Dan's haircut

2007-07-16T22:44:00.000-04:00

Leah asked me to post some of the pictures from Dan's haircut. Apparently after the surgery he was left half coiffed and opted to even it out...