Remission!

Remission! I have been waiting to hear that word for 8 months now and I heard it come out of my Doctors mouth yesterday! That's right, I am in remission.

I finished up the chemo in mid August and have spent the last 2 months praying for remission but not allowing myself to get my hopes up too high as the last 7 years and especially the last 8 months have been a roller coaster of ups and downs. Joa as usual has been a rock for me as I seem to bounce between calm and total panic depending on the minute. I know that God calls us to live for today and not worry about tomorrow but I have really struggled with this over the last 2-3 months.

I have had a tremendous amount of support both emotional a physically over the last 6 months. There is no way to mention everyone but Joe Lampen raised a ton of money and ran the relay for life in support of his cousin and me. Donna Messinna ran the Chicago Marathon for the LLS in honor of Me and Kara Kontos who has also had some long struggles with blood and other types of cancers. Ryan Cook and the rest of my friend who turned the Wedding Dress Party in to a fund raiser (see the Wedding Dress Party post for details on that one)! My friends have constantly called and checked up on me, neighbors have made dinners and others have let me use their cottage for a place of relaxation and rest. Countless people have been faithfully praying. My mother is also a rock and has been a relentless prayer warrior for me.

I have also been researching some holistic methods of treatment as my Doctors tell me that this disease will be back. I have visited 3 holistic Doctors and I will have my final recommendation next week. Although all of the Doctors have different ideas of how to treat this one this is for sure. My immune system is and has been severely compromised and it seems that there are a lot of things that I can do to clean it up and boost it's performance, therefore hopefully holding this cancer at bay longer and maybe forever. I will keep you all posted on that once I choose a Doctor and start the therapy.

The last week or two have been great as I have had some time to unwind with the fam and go on a 3 day mountain biking trip up north with the boys (this is our version of deer camp, picture posted below after our Iceman pre-ride and a misc night ride pic).

Back to the Remission thing. I after 6 months of Chemo and 2 months off I had a PET scan to to re stage the cancer and see how the Chemo therapy had worked. My Doctor was quite confident but I have been on some drugs that are for Non-Hodgkins and I have Hodgkins so no one knew for sure if it would work. There is one that is for sure in the world of cancer and that is nothing is for sure. Anyways I was preparing myself for him to say that we got most of it but not all of it and that I would need more treatment either now of in the near future. However my scan was crystal clear and I am in remission. I am still in shock but I'm coming around and ready to move on.

Thank you all for your prayers and support. We are truly blessed.

Tim and Joa

Celebrating

Hi friends.

Join us in celebrating Tim finishing his six rounds of chemo! Ah, deep breath and a praise to Jesus for getting Tim through it. He has a scan in the beginning of October and we will have results mid October. Please join us in praying that the scan is CLEAR!

We have learned over and over again how quickly things change. So what we are doing now is celebrating what we know to be true now; that chemo treatments are done and the cancer should be gone.

In our gladness of no more treatments we are also hit with the reality of living with this cancer that is known for coming back. In some respects it is easier to be fighting it with chemo rather than just living and waiting for it to rear its ugly head again. It does however bless us by giving us the daily reminder to slay our dragons of fear and surrender daily to our Lord, Jesus.

In addition to surrendering everything to the Lord we also believe he has given us a responsibility to take care of the bodies he has created us with. The Lord has designed our bodies perfectly, and we want Tims as healthy as possible so it has the strength to fight this disease. That is why we have started to look into holistic/natural approaches to cancer also.

So, please celebrate with us, congratulate Tim if you see him, and please continue to pray for him! We will update you when we know results of the PET scan.

Below are a few thoughts that have really blessed me today. Hopefully they will bless you too.

~When one loves God with the entire soul, doubts and struggles do not disappear but their effect on us diminishes. -Philip Yancy

~For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. -Peter in 2 Cor 4:17

~Gods faithfulness can never falter, and that through the labyrinth of history and the disorder of personal lives there runs the constant thread of Gods purpose. -Philip Yancy

~I know not which is most profitable to me, health or sickness, wealth or poverty, nor anything else in the world. That discernment is beyond the power of men or angels, and is hidden among the secrets of your Providence, which I adore, but do not seek to fathom. -Pascal

two more chemo cocktails for Timmy

Just met with the Doc. Tim is getting two more rounds with the same drugs but one will have reduced dosage. They want to push for the best result with the least amount of damage to his bone marrow. That needs to stay strong for future chemo when this ugly beast rears its head again in the future.

Tims counts were close enough to normal this morning to receive round five. In August he will have his last treatment. We look very forward to being done and love being able to see the light at the end of the tunnel. At least for awhile.

That is the update for now, but we have learned it always seems to change. So we are becoming more flexible in what the future holds. We are focusing on living for today and getting up the next morning and doing it again. After all, this is the DAY the Lord has made. It doesnt say month :).

Thanks for all the prayers, keep em coming!

Love to all

Tim and Joa

So so late. So so sorry.

To our faithful friends and prayer warriors,

I am sorry we never ended up posting an update after Tims last treatment. The month has passed by so quickly!

Round 4:

Last month we found out that Tims CT scan showed definite improvement and the spots were shrinking as expected. They said at that time that he would likely have one or two more rounds to shrink the spots on his spleen further as that takes longer to react to the treatments. It did take him longer to bounce back after this treatment. He just feels pretty off and has 'chemo brain' well into the following week. But usually a week later he is back to himself.

Round 5:

We went in this morning fully expecting to get round five done with and having only one more to go. Because of Tims rare case of Hodgkins its not clear EXACTLY how to treat it and how many rounds he should have. This morning we found out that because Tim is bouncing back slower they are not sure they want to push to six treatments. Now they are talking that they might stop at four - which would mean he would be done with treatments. So he did not have a treatment this morning. And as it turns out when his blood counts came back, his count was too low to have treatment so he could not have received it anyway.

So the doctors are talking, we are praying and waiting to hear. If he does have more rounds, round five will likely be next week once his blood counts are up.

We will post once we hear what the plan of action is. But for now, please just pray with us that the Lord gives the Doctors wisdom on how to treat Tim.

Thanks friends!

Tim & Joa

#3

Well we had another long day at the Chemo clinic but I am doing quite well tonight compared to my last two treatments. I have a quick two hour infusion tomorrow and then Round #3 is done. I will be having a scan in a few weeks to check for progress. If the scan looks good we will do 2 more rounds for a total of five treatments.

Thanks,

Tim and Joa

After a long day, Tims second (of four hopefully) round of chemo is finished. It went okay. And it is done.

Walking in the house smelling dinner in the oven dropped off by a dear friend and the fridge stocked with another delicious meal from a great neighbor encourages and comforts us. It makes me feel so supported it brought tears to my eyes. ( I told you it had been a long day :)

Thanks to everyone for ALL the prayers, meals and help for the kiddos that was given today.

Tomorrow we will go in for the last bit of treatment but wanted to quick send out an update because we knew so many of you were praying.

Love to all, and a huge THANK YOU!

Joa & Tim

The Wedding Dress Party.

The Wedding Dress Party was a riot! It was a party that will be difficult top and impossible to duplicate. We had a perfect combination of people and the venue at Cygnus 27 atop of the Amway Grand Plaza Hotel was stellar! This entire party was Jessica Cook and Katie Kuiper's idea. They were talking about wearing their dresses and my wife was all over it. Once the three of them and others got so excited Jessica' s husband Ryan set things in motion like only Ryan could do.

The evening started out with quick refreshments in the Kooistra's room at the JW about an hour before the party. A few of the girls changed into their dresses while the boys enjoyed a few quick cocktails. The girls looked great (especially Joa) and the looks we received as we rolled out of the elevator at the JW with 4 brides and grooms was priceless! The looks continued at we walked from the JW to the Amway and the guests at the Amway looked quite confused. A quick trip up the express elevator to the Cygnus Private dining rooms and the party begins.

We had some time to mingle, catch up and view all the dresses before a fabulous slide show. The slide show was a compilation of all of our wedding pictures and was quite funny. After the slide show dinner was served by the Cygnus staff and the food was unbelievable. The meal was topped off with wedding cake for dessert. There was a best man toast given by Joel Brandt (every ones best men) and it was hilarious. Once the best man speech was given, Ryan had a surprise cooked up.

He called me up and challenged everyone in attendance to donate to my marathon fundraiser and the Cook Foundation would match the donations 3 to 1. I was astonished by the gesture and even more surprised by the $900.00 that my friends donated in about 1 minute. With the Cook family 3 to 1 match we were able to raise about $3000.00 dollars for the LLS! The total now stands around $9,000.00 given by my friends and family in honor of my fight with Lymphoma and my commitment to run a marathon to raise awareness. With this kind of money people at going to expect me to qualify for Boston!

Now back to the party. It was now time for some dancing! The girls were all on the dance floor but it took some work to get some of the boys (myself included) out there. Once the late night and sore feet set in the party came to a close. I am grateful to Ryan for throwing such a great party. It was great to see some people that I haven't seen for a while and spend a great night with my wife. I am thankful for the money that was raised as it was a truly humbling gesture.

Tim

Cycle one is in the books.

What at week. I'm sitting here on Saturday morning just relaxing and trying to rest (those of you who know me well know that I don't slow down and rest well). The kids are at my parents for the night so Joa and I are getting ready for The Wedding Dress party tonight at the Amway. I just picked up my Tux and Joa's dress still fits great so we are ready to go. Since I had a few minutes I thought that I would give you a quick update on my first week of treatment.

I checked into my oncologists office on Tuesday morning for my first treatment of chemo therapy which consisted of Rituxan and Treanda. We were underway by about 9:00 AM. First infusion was Saline and then some Benadryl to calm my immune system a bit. The Rituxan is a very aggressive protein that begins to eat cancer immediately so your immune system can "freak out" a bit without the Benadryl. All was well for the first hour or two but then I started to have some issues like rising blood pressure, stomach pain, nausea and a higher heart rate. We slowed stopped the drip and switched to more saline and a steroid to calm me down. After an hour or so we started the Rituxan back up again and slowly increased the rate every 30-40 min. I started to get the chills so I wrapped my self up in heated blankets but then developed a small fever and began to over heat. By about 4:00 I got the entire dose of Rituxan in and switched to some anti nausea meds followed by the Treanda. At bout 6:00 or so everything was down and I was feeling decent all things considered. Well enough that I could go to Max's choir concert that evening.

Wednesday morning at 9:15 was a quick bag of saline and a second dose of Treanda. This entire appointment was only about 2 hours. I felt good so I worked from my home office in the basement.

Thursday was a quick one hour appointment to have an injection of Neulasta (white blood cell booster). Since it has been my first time on Neulasta since 2005 I needed to make sure that I didn't have a reaction. I didn't so off I went to Shoreline for a few hours. I got tired around 2:00 so I worked from home for the rest of the day.

Friday I was feeling good so I went to the office for most of the day and felt pretty good all things considered.

This week has been tough but the outpouring of support from my friends, family, church, LLS teammates, customers and Shoreline has been totally humbling. The chemo is working quickly as the large mass of lymph nodes in my left axillary are gone after only 5 days. I'm moving slower than normal but feeling OK. My next treatment won't be until April 19.

Everyones prayers have been felt and the support appreciated.

God Bless,

Tim, Joa, Max, Liv and Charlie.

Here We Go Again!

The weekly miles have been piling on and weekend long runs are now 15 miles but I have hit a little snag. Over the last month or two my fitness level (which should be really getting good about now) has not been improving but rather deteriorating. I have been a little fatigued (which is somewhat normal for marathon training) and my perceived effort during my runs has seemed really high based on the pace I was running. In addition my heart rate (which I monitor closely) during my runs has been slowly rising over the last month or two and I have been very winded after running up stairs. I thought that most of this was just training fatigue or related to the fact that every one in the house has been sick for the last 6 weeks. That was until I had "soaking night sweats" 3 nights in a row which is a normal symptom of Hodgkin's Disease.

My oncologist performed a blood test and determined that I am about 2.5 grams (I think that what he said) low on Hemoglobin. I was a little stressed out and I'm not sure I heard everything exactly right. Anyway the symptoms of being low by 2.5 grams (or whatever) of Hemoglobin is like being a pint or so low of blood hence the shortness of breath and high heart rate during exercise.

So to make a long story short it is time to start up the Chemo and put this disease back into remission. My marathon efforts are off for now (Doctor's orders) but after treatment I will likely do a fall marathon for the LLS instead of the Bayshore this spring. My treatments will start on Tuesday March 22nd and will go for up to 6 months but will likely be 4 months. I will have an 8 hour drip of Rituximab on Tuesday and a 1 hour drip of Treanda on Wednesday followed by a dose of Neulasta on Friday. MMM.... Sounds delicious! I will be on this schedule once a month and the chemo will be administered in Holland. Based on the drugs and my overall health I should do pretty well.

This is not a "knock down the symptoms" type of treatment but rather a "put it into remission treatment". Since the Cancer is not curable it will come back but it may be 1,3,10 or 20 years until it reoccurs.

This won't be fun but Joa and I are ready to fight and get this behind us. I have been prepared for this day for along time so I am well prepared for what is ahead. I guess I'm going to learn how to slow down a little and listen to what God is trying to tell me.

On a side note I am flattered by the donations that have come in to the Leukemia and Lymphoma Society on my behalf for committing to run the Bayshore Marathon. Although I will not be running Bayshore the LLS will be moving me to a fall marathon after my treatments are complete. I will continue to be fundraising throughout the summer. I love endurance events and I can't wait to start training again, and I only stopped yesterday! It's going to be a long 4 months although I am excited to play lots of soccer with the kids instead of logging miles.

We are so thank fun for all of the donations, support and most importantly the prayers.

Tim, Joa and Family

Bayshore 6 Week Training Update

I am officially ready for Spring! I am into week 6 of my Bayshore Marathon training and I haven't been able to take my Yak Traks off yet. I love to run out side but the cold dark mornings are getting old. The mileage is slowly creeping up so I am running about 25 miles per week and riding my mountain bike at lease twice per week.

I had one small set back last Sunday when I stepped on something under the snow and hurt my foot. In a effort to rest I have been riding the bike most of this week and spending a lot of time icing my foot and stretching. It seems to be working so I am hoping to be back on the road by Tuesday or Wednesday.

I have not had much time to do any real hard workouts due to the snow but I was able to race my mountain bike (which is a very hard workout) twice. One race was in 4" of snow and the other was in 3" of mud (see the pic's below). I am thrilled that my health is still good and that I am able to do the activities I love! I am inspired day by day when I think about all of the people who are struggling with blood cancers and are struggling through treatments.

Fund raising for the LLS is going great and I am just over half way to my goal. I am humbled by the generosity of all those who have donated. Words cannot describe my gratitude and I am so thankful for your donations, thoughts and prayers. Never hesitate to call if you want to join me on a run or ride.

God Bless,

Tim

Update & recap

Hi all,

Time for an update. But instead of me this time I thought I would just cut and paste what Tim wrote for the LLS marathon training packets. (Lymphoma & Lukemia Society). YES! He is running the Bay Shore Marathon sponsored by the LLS. But more on that later!

So here it is.......its a great recap......and please keep praying for Tim!

Stage 3 LPHD. (Lymphocyte Predominant Hodgkin’s Disease)

Diagnosis. July 2005

Current Status: Treatment Pending. Chemo Therapy will begin once I begin to have symptoms or medical difficulty.

Additional Information: My wife Joanne and I along with our 3 kids, Max (7), Olivia (5) and Charlie (3) live in Holland, Mi. We like to spend as much time as possible boating or downhill skiing as a family. My hobbies and passions also include running and mountain biking.

I was originally diagnosed in July of 2005. 6 cycles of ABVD chemo therapy were administered and after 6 months I was declared in remission. It was a long 6 months dealing with the side effects of chemo while trying to be a good husband and father as well as keep a career moving along. God however always gives me the strength to deal with today no matter what it may bring. In July 2006 a routine scan showed that the Hodgkin’s was growing again. I was referred to the U of M to discuss a stem cell transplant and I prepared for chemo therapy treatment again. Through prayer meetings and Gods healing I never received treatment for the reoccurrence in 2006 and remained cancer free for the next 4 years. In March or 2010 my 5 year scan that was supposed to be my last scan came back positive with enlarged Lymph nodes in all the same places again. I took a second trip to U of M for a stem cell transplant consultation and second opinion. I learned that at this time I am not a candidate for a transplant. The doctors explained to me that the Lymphocyte Predominant type of Hodgkin’s Lymphoma that I have is very rare and makes up less than 5% of all Hodgkin’s patients. The good new is that this type of Hodgkin’s grows slowly and responds well to treatment. The bad new is that there is no know cure for it. It can be treated to some extent but It cannot be totally eradicated. Since it cannot be cured I am waiting until I have symptoms before seeking treatment. We hope that the next round of chemo will knock the cancer down for a while and then we will do it again and again and some day a stem cell transplant may be an option. But for now, We wait.

The work that the LLS is doing is very important for people like me because it is very possible that the money you help the TNT raise will fine the cure for LPHD and allow me be cured and live a normal life. There may not be a cure yet but there is always hope.

On lesson I have learned by this experience is to focus on today and on the things and people that matter the most. Over the next 5 months as you begin training I challenge you to focus on today. Love people with a heart of compassion and service and live every day to the fullest.

Tim Van Vliet