sorry so long...(again)

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...

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

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!!!

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

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!

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

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)