I'm writing this after the fact, but wanted to insert a note for before radiation started. We are so grateful for how things worked out in the in between time. There were 3 weeks between chemo and radiation.

The first week was production week for The Importance of Being Earnest, the play the kids had been working on with a community theater group. This play came along right as Ian got the PICC line and had to give up swimming and taking care of horses, so it was a godsend! He ended up with a small part, Merriman the butler, as well as doing back stage help. Helen was Assistant Director/Stage Manager and played the other butler in the play. Both kids were great and the play ran for 2 weekends.

In addition, the 2nd and 3rd "between" weeks were the Jr. Lifeguard Camp. So, Ian really got to be a "normal" kid for a while before starting radiation on June 28. Yeah!

Natalie's meeting with surgeon and radiation prep

Hi again,

Here I am with another update for the second day in a row, again with news we were hoping not to have to share.

I saw my neurosurgeon today, the surgeon who performed my initial brain surgery 9 years ago. He is very much in agreement with the neuro-oncologist that my latest MRI shows some small growth in the tumor location. Basically it appears to be growing into the tumor cavity. He also agrees that we need to do something about it, i.e. go in and see what's going on, but that it's not an emergency. He also wants to get pathology done to see if it has changed at all from the previous pathology.

So, the plan is to wait until after Ian's treatment is finished (and my music conferences are over!) and do another MRI in early August. Then, we will plan for surgery in the following couple of months. Again, we are fortunate to be able to take our time and choose when to do the surgery, within reason.

Ian had the scan to fit him with the mask for radiation today and is even sporting 3 actual tattoos marking spots for lining him up on the machine! He said it was painful, so hopefully that's a deterrent to getting actual "artistic" tattoos. ;-)

I would ask for your prayers as I deal with all of this and plan to lead a women's retreat next Tues. on "Hope" - what an appropriate subject! I've done a lot of preparatory work, but am struggling to buckle down and focus! I plan to follow that with a couple of sermons on the same subject, which will give David a much needed break to prepare for the next month when I will be gone much of the time.

Thank you again for all that you do.

With love, Natalie

Radiation and Make A Wish

Hello everyone,

Well, we didn't get the news we were hoping for today when we met with the radiation oncologist. Nevertheless, we realize we are still in the realm of "normal" treatment for Ian's Hodgkin's.

Basically, the scans are not clear. This could be due to the cold Ian is still recovering from, but the Dr. could still feel a lump in the lymph gland on the right side of the neck. That is where the original lump was so pronounced. When the Dr. we've been seeing came, she confirmed that it felt like it had been feeling before the cold set in.

We understand that 8 weeks of chemo and 17 days of radiation is normal protocol for Ian's cancer and staging. If the scans had been clean and nothing could be felt, there would clearly be no need for radiation. That is not the case, so radiation is the next step. Another PET CT scan will not be done for at least 2 months because it can take that long for viruses to truly clear out of the system. My sense is that the Drs. really felt this was the way to go.

The other unfortunate thing is that transferring the treatments to our local hospital was not encouraged. They very much prefer to have the same Drs. following Ian and want the ability to design treatment specifically. It would not be a standard "recipe" they could pass on to another hospital. That means staying in Palo Alto for 3 and a half weeks during radiation treatment.

Tomorrow we will go back to Stanford immediately following my appointment with my Neurosurgeon to see how he reads my latest MRI and what he recommends as the next step for me. At Stanford Ian will have another scan that will provide a foundation for his radiation treatments.

He will get to participate in the Jr. Lifeguard Training our local Camera Club has so graciously paid for from June 14 to 25. Then, from June 28 to July 21, except weekends and a July 5 holiday, he will have radiation therapy. Ian and I will stay either at the Ronald MacDonald House or a hotel. The Drs. also want to find a place where Ian can swim while he's there so he can keep that activity going. ;-)

So, our summer plans are pretty well laid. Fortunately, the treatments are fitting between a few other things already on the docket, so we can hopefully keep those plans. This is production week for The Importance of Being Ernest both Ian and Helen have been working on and will be performed over the next two weekends. Thank goodness radiation starts after that!

On another exciting note, I forgot to include last update that the Make a Wish people came to visit Ian a couple of week's back. His first wish was to get to do experiments on an ocean going science lab ship. That would have been SO right up Ian's alley - science and water, his 2 favorite things! But, that proved to be a bit difficult to provide and Ian opted to change his wish to meeting Discovery Chanel's Mythbusters and getting to blow something up. So, he has an adventure to look forward to!

Life is so full and we are so blessed. You bless us as well. Thank you all!

Love, Natalie

Happiness is... no PICC line and a clean preliminary scan report!

We had a long day at the hospital again yesterday, with some unexpected out comes.

We had both the PET CT scan and the CT scan, which make a long day in themselves. As we waited to have routine lab work done, I noticed Ian's PICC line area was enflamed with an angry looking rash and immediately alerted the clinic that we needed someone to look at it.

That kicked things into high gear. In all likelihood it was just a reaction to the dressing adhesive, but there was concern a staff infection might develop. We weren't expecting to meet with any doctors, but ended up seeing three, including the head of the cancer center. They decided they'd better take a quick look at the scans and make sure they were good enough to remove the PICC line, which is how we ended up with it removed and being told that a first look indicates clean scans. Hooray!

Of course, there will be a closer look and other Dr.s to consult. The PET scan wasn't as clear as they would have liked because Ian came down with a nasty cold Monday and there were hot spots in his throat and a lung from that. Nevertheless, we are more hopeful than ever that Ian will not need radiation.

We will have final reports next Monday. And maybe then we can discontinue weekly drives to Stanford! Thank you all so much for your faithfulness to us during this time.

Blessings to all, Natalie

I had told Ian I wouldn't shave while he had the PICC line in his arm. If he was going to have to deal with that I would deal with the itchiness and warmth of a sparse beard. But now that he got out the PICC line I got to shave!

Ian likes me better with the scraggily beard!

Thank you for all your prayers and support!

David

news articles and Human Race

Hello everyone,

I didn't get a Monday update out this week, but this is actually a good time to do it. Ian's had a bit more nausea than usual this week, but pain has been pretty low. We only have one more chemo treatment! Yeah! This Monday we hope to fit in the end of chemo Pulmonary Function Test and Echocardiogram. The following Tuesday, June 1, he will have the PET and CT scans and then Monday, June 7, we will see all the Drs. again for the results. Of course we are praying the cancer is gone and we will have no need for radiation, which will be the next course of treatment if there is still any sign of cancer.

My Dr.'s office went ahead and set up an appointment for me to see my surgeon on June 8, so we'll be traveling south 2 days in a row that week. It's earlier than planned, but my anxiety levels are such that it will be good to move forward.

I have had to face the reality that even though I am counting my blessings and am so grateful for the good news, I still have enough stress, anxiety and just extra stuff to do to feel overwhelmed! Fortunately next week we will have a break. I hope to have a couple of days away on my own next Tues. and Wed. and then the family will join me for a much needed vacation at David's parents' home on the Monterey coast. I am very much looking forward to it, even though the garden isn't finished, the yard is a mess, my frig. really needs to cleaned, etc., etc....!

I have a couple of neat things to share as well. Here are links to a couple of articles talking about Ian from one of our local papers this week:http://www.weeklycalistogan.com/articles/2010/05/20/news/local/doc4bf47843944a5228525024.txt

http://www.weeklycalistogan.com/articles/2010/05/20/news/local/doc4bf47b7678918045240806.txt

Here is a photo of Ian and his friends during a break in the Human Race walk they did Sat., May 8, where they raised over $700. for the Leukemian Lymphoma Society!

Thank you all so much for your love and support. Keep praying, please! You hold us up. Love, Natalie!

It's Monday everyone,

That must mean it's chemo day. Although we all seem a little low energy, Ian did fine today and has even gone to the play rehearsal that he doesn't usually get to on Monday evenings. It was nice to be home in time for dinner before the kids went off to rehearsal, which we had only thanks to a local "food fairy" who gave us a bunch of delicious soup yesterday. Wonderful!

This last week turned out to be much better than the first week of chemo when we had the same drug combo. We are very grateful for that! Ian did quite a bit of walking this week, including walking 10K (over 6 miles) with his friends who participate in a local even with a team in support of him and to raise money for the Leukemia Lymphoma Society. They raised over $500! It was a very special gesture on their part.

Although we have so much to be thankful for, the wear and tear of stress is showing a bit in our family. Helen is also heading into finals next week, so we very much appreciate your prayers for the whole family.

Thank you so much for your love and support, Natalie

Hi all,

Ian was able to have his chemo today and it has gone pretty well so far. This is the same combination of drugs we had the first week, so we are preparing to have to deal with some hard days, since that first week was pretty hard. Hopefully we know better how to deal with it this time. They did give Ian some extra preventive meds today. He's hoping to feel well enough to spend some time with friends tomorrow.

On a bit of a side note, I also had my annual MRI today. I have been tumor free for 9 years and things still look pretty good. However, the Dr. feels there is a small change that may indicate some tumor growth. Apparently this type of tumor often needs follow up treatment after a few years, but can be dealt with through surgery or chemo quite well. This was not the news I was expecting today. I am still symptom free and the Dr. says this is no emergency and we can take our time addressing it. I will see my surgeon in two months - planned so we can get through Ian's treatment first. I will also have another MRI in 6 months instead of my usual year. It is likely I will eventually have another surgery for a biopsy and to remove any growth that can be removed. Then there will be assessment on whether or not I need chemo. This was a pretty heavy blow today, but I know I will be okay and we will all get through this additional trial.

Although it is hard to count blessings at times like this, I am still grateful that the types of cancers Ian and I have are so treatable, that we have a community around us holding us up and that there are so many, many other blessings in our lives.

Thank you so much for ALL of your prayers for us, past present and future!