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)

Summer News

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!!!

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!

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!

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

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!

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

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

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

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

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!!!

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!

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!

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!

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...

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...

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!

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)