Hard times, but improvements on the way–I hope!

It's been a hard week, but things are going better.

First I should say that Ian was poked and prodded by 4 doctors on Nov. 10 and given a clean bill of health. Hooray! He is doing so great.

I started the new trial chemotherapy drug Wed., Nov. 10 (which happened to be my Dad's birthday–Happy birthday, Dad). That day I also finished taking the steroid I'd been on since surgery to keep brain swelling down. I'm still on the anti-convulsant for a few more days, but that is the last thing I have to take due to surgery. I'm just waiting for all the scabs to be gone from my scalp so I can go get my hair shaped up. ;-)

Anyway, the next day was great. I even boasted on Facebook that I had done a half hour of Wii Fit yoga and gone for a walk (up a hill, no less). The next day fatigue set in and it got worse from there until I was in pain and in bed by Sunday evening. I won't go into all the gory details–and they were gory–but I started feeling better a couple of days later.

I still don't know if it was the chemo or leftover effects from the steroid or something else altogether, but I was pretty sick. No doubt my immune system is not at its best. My Dr. had me stop the chemo on Monday to allow me to recover some. I went back on it on Thursday–so today is day 3. So far, so good. I'm certainly not at 100%, but I'm doing okay. Yesterday I played the piano and did some weaving. Since it was raining I didn't walk, but was moving around the house pretty well.

I'm so grateful to our church folks, who have been bringing in dinner meals all week, so my family has eaten well in spite of everything! David has juggled being back at work and the kids schedules, including a trip to Oakland Airport early Thursday morning where Helen flew out for a long planned trip to see a friend in Austin, TX. She will be back late Monday. We've got to get this girl driving! She's close–maybe she'll have her license by the end of the year. Then, of course, she'll want a car!

Thankfully, David's father has also been doing better. We are looking forward to spending Thanksgiving with my folks in Mariposa and spending some time with David's family in Merced afterwards.

My hope and prayer is that I will continue to improve. Getting off the anti-convulsant in a few days should help. I know I truly have a lot to be thankful for this Thanksgiving. I hope it is a time of blessing for you and your family as well.

Thank you again for all the positive vibes you send my way. :-) More to be thankful for!

Love, Natalie

What's Next?

Dear friends and family,

I write this after an emotional day in which I made some hard decisions and had nearly 50 staples taken out of my head!

I expected to be offered options by my doctor but I don't think I realized the full ramifications, or the need to act immediately upon them. First of all, the surgery was very successful in that my surgeon was able to remove all the cells he could find without causing any deficits in my brain. But, there are still options to consider. Basically, my options were:

1. Watch and wait for the tumor to start growing again, which it inevitably will. Surgery can only do so much and there are always cells left behind. The area in which it could potentially start growing is in speech and language–not an area in which to mess around.

2. Do radiation therapy, which is the most sure way of getting rid of tumor cells, but also has the danger of causing deficits given the tumor site, some of which may not be apparent until years down the road.

3. Start on a chemotherapy drug that has been used for about 15 years. The drug is taken orally 5 days a month for 12 to 18 months. It has been shown the shrink the size of tumors.

4. Enter a new drug trial for a chemotherapy drug being tried on recurring low grade tumors. There are high hopes that it inhibits the recurrence of tumors. It also is an oral medication and is expected to be taken for about 12 months, but it is taken every day.

Ten years ago I was determined not to have chemo or radiation. I'm not sure I understood the ramifications of that determination then, but I better understand them now. It is an obvious choice to choose one of the chemotherapy alternatives. Either one has expected mild side affects and lots of tests to go along with them. The new drug trial is very new, there are only about 20 people on this therapy, all at UCSF, and they only intend to have 60 participants. There are a few more tests to endure, but not that many. On the side of jumping at this opportunity is the need for a biopsy within 3 months of beginning the trial (which I have because of surgery). I can also opt out at any time if it is not working for me and move to the chemotherapy that has been used for 15 years.

I have chosen the new drug trial option.

So, I started the process yesterday by getting initial tests out of the way. If I start the trial by Wed., Nov. 10, I can use my MRI after surgery as a base and that is one less test to do. I had a lung x-ray, an EKG and my blood drawn to check for Hepatitis. This morning I went for fasting blood draw that checked another batch of things. The last thing I did yesterday before we left the hospital was to have my staples removed. It hurt. It was nearly 1 p.m. We left home at 6:45 a.m. to make our appointment. I had already endured making a heavy decision and a variety of tests, and it was the last straw. I broke down on the way back to car.

Tomorrow we will go to Stanford for Ian's first 2 month check up. We have every reason to expect him to be given a clean bill of heath! But, this is something we will be doing every two months for the next year. And now, we will add lots of tests and a chemotherapy treatment to the the following year as well, much of it taking place at UCSF. On our way home we will stop there to begin my therapy.

It is a lot to take in when I'm not even recovered from surgery, but I feel it is the right decision to make. And, I trust that it will not feel so overwhelming in a week or so. The news is still good. Ian is doing great. I am recovering well and that fact that my tumor is at the same grade level gives me very good options. I can look forward to a high quality of life for years to come–many years.

My goal is to make to most of this next year. I want to find ways to thrive and live life to the fullest this year instead of seeing it as a burden. Our beautiful daughter, Helen, is about to launch out on her and is doing exciting things. Ian is growing into a young man we can be proud of and doing his own new things. There is potential in every part of our lives with which to engage with passion and creativity.

We feel truly blessed and very grateful. Our journey through health challenges this year reminds us yet again of our need to celebrate each day in love and life and joy. We hope our story can help others live in the full blessings of God each day.

We also covet your prayers for David's Dad who is dealing with multiple secondary symptoms from the Multiple Myeloma he has been fighting. While better at the moment, pain management and other issues are at times very difficult. It is especially hard on his mother, Barbara, and his sisters as primary caregivers. They can use all the prayers they can get!

Thank you so much for supporting us through this time. Love, Natalie

After surgery

I am now a week past surgery. I haven't updated the blog because I've been a little fuzzy headed. To be expected after brain surgery, I guess. And, David has been a little distracted. You can't tell by reading this, but it takes a little longer when I have so many typos to clean up!

The good news is the surgery went very well. They went back to the same place the tumor was growing 10 years ago and got all they could find of the returning tumor. The pathology is not back yet, but all signs point to the same grade of tumor–the lowest grade they give adult tumors. Obviously, we have to wait for official word. If the tumor is at the lowest grade, there is the possibility I can participate in a new drug study only being used at UCSF to prevent the return of low grade tumors. Hopefully, I will never have to had another brain surgery!

I expected to be in the hospital 3 nights, but got out a day early, so I came home on Thursday. And I got to wash my hair! This is a big deal when you have blood caked in your hair and the nurse has told you it will be 10 days before you can wash it! But the surgeon himself gave me the go ahead. The last time I had surgery I had half my head shaved, but this time they had "new haircuts" and only shaved the incision line and a few other spots they had to for surgery. So, with my curly hair, I look pretty normal. The thick line of staples is pretty well hidden, and I will have them removed on Monday, Nov. 8. (I haven't counted them, but there are a lot!)

My parents have been helping us out, staying with me and providing transportation and cooking and cleaning, etc. My dad, his skills always in demand, has even taken on a bathroom that is still unfinished from our remodeling project–the never ending remodel.

I have been out a little, went to church on Sunday and took a walk around to see some Halloween decorations, as you can see from the picture.

So, I am doing very well and appreciate all your prayers. We should find out about the pathology later this week, or, at the latest, on Monday when I see my oncologist. I am taking things slow and steady and expect to experience improvement every day.

I pray this finds you in a blessed place, as I feel blessed by you. Love to all, Natalie

Preparing for surgery

I feel the need to be in touch with everyone as I go into this final week before surgery. Overall, I am doing well and the family is doing well. Helen is busy with college classes, catching up after her play. Ian is doing great–as active as ever. David is holding down the fort at church, which is struggling with some serious challenges, in addition to supporting me and the kids emotionally. I know he is drained and is looking forward to the down time we will take following surgery.

For me, there are ups and downs. Although I know fairly well what to expect from my surgery, the field has changed and advanced in significant ways. And there is the unknown of what they will find in there! In addition, I had two years to focus on my health and wholeness before my last surgery. This time, I have been a little distracted, to say the least. I have turned my focus more inward in the last few weeks so I can be in the best shape mentally, physically and spiritually that I can, but, honestly, it's a challenge. It has been a blessing to spend extra time with friends and our community continues to support us in wonderful ways.

I am looking forward to Sunday. A part of our Sunday morning service will be devoted to a time of prayer for me. I would love to gather friends near and far around me. If you can be there, no matter what your faith tradition may or may not be, please come to Community Presbyterian Church, 1407 Third St., Calistoga, at 10:30 this Sunday, Oct. 24. If you can't be there in person, I know you will be with me in spirit.

My surgery is 7:30 a.m. Tuesday, Oct. 26. David will update the blog and be sending out emails as soon as he can. We look forward to good news and a positive time of healing soon!

Thank you all for being such a blessing to me. Love, Natalie

Surgery news

David wrote a great email summing up our currents "stuff," so I'm putting it here for our blog. There is enough on our minds with that we are feeling the strain at times and have to work to deal with it all in the best way we can. Fortunately there are also blessings, like the play Helen is in at the JC, Ian's 15th birthday celebration and the gift of a tennis mentor who would just like to work with Ian for as long as he enjoys the game. Thank you again for your love and prayers. Love, Natalie

Hello All,

I want to keep everyone informed as to where things are and how things are going. The support we continue to receive throughout this time has been wonderful. Ian has fully rejoined swimming and is now taking tennis lessons and loving it! He celebrates each day of remission in his own wonderful ways.

Natalie will have her brain surgery on Tues. Oct 26 at UCSF. The Friday before she has a whole day of prep, as well as Monday the 25th. They tell us she will be in the Hospital through Friday and if all is well should come home then.

With this news of more prep and longer stay than we anticipated and what she went through last time the reality of what is coming is setting in. Overall we're both doing quite well but we both find ourselves at times standing in a room looking around going, "now what am I needing to do?"

We are confident of God's love and presence and are reminded again of the beauty and blessings of each day. But please hold us, and Ian and Helen, in your thoughts and prayers as this journey is fraught not only with bumps and bends but also many whispered fears.

Blessings,

David

BTW, our family was deeply involved this year in Relay for Life and it appears our we have raised over $43,000 in Calistoga! Great work and may they develop more cures!

Surgery Date

Hello all,

On Monday I went to UCSF for another MRI and to meet with my surgeon. As hoped and expected, the MRI shows no further growth since May. However, the difference in prior year's MRIs is still apparent and my surgeon feels surgery is still needed. He said it is not an emergency and I could chose a time that works best, although he would hope that I would not wait too long. I've chosen to have surgery sooner rather than later and not wonder when I might have symptoms. In light of Ian's 15th birthday on Sept. 25, Helen's play the first 2 weekends of Oct. and a couple of other events David is involved in, I opted to ask for a date after Oct. 25. On Thursday I learned the date will be Oct. 26. I'm confident in my surgeon, one of the best in the world, and believe all will be will.

There is the possibility I will be encouraged to follow surgery with chemotherapy or might participate in a study using a new drug that inhibits the return of low-grade tumors. I will learn more after the pathology study is done.

When David called his folks on Monday with our news, he learned his father was fighting a fever. He ended up admitted to the hospital and diagnosed with a pulmonary embolism. This was pretty scary and very likely was caused by the cancer drugs keeping his Multiple Myeloma under control. He is still in the hospital, but has been moved out of the ICU and will go home tomorrow. We are thankful!

We are also thankful Ian is back to swimming, increasing his energy and appetite! We will both walk the survivors' lap in tomorrow's Relay For Life and he will be giving a speech during the lighting of the luminaria as the Relay's Honorary co-chair. Helen is doing well, focusing on theater classes, the play, and French this fall.

We are thankful, too, for all of you and pray you are well, even as you pray for us.

In love, Natalie

Remission!

We just arrived home from Stanford where Ian's Oncology Drs. gave us the results of the scans taken Aug. 23. The news is very good. The CT scan was completely clean and PET CT scan only shows a small highlight that is very likely not related to the cancer. The Drs. feel very good about how Ian is doing and even gave him the go ahead to swim with his swim team in the late afternoons even though the sun is still out. Technically he's supposed to stay out of the sun for 3 months after radiation because that area is very sensitive.

Ian also had a chest x-ray today because he has a bad chest cough from a cold he came down with more than a week ago at the homeschool camp Aug. 24-31. But, the x-ray was clean, so we are also thankful for that! Hopefully, our next check up will be in 2 months (protocol through the first year) unless the radiation Dr. wants to see Ian sooner.

Ian did have a wonderful time at camp and we are so grateful he was able to attend with everything he's been through this year. The week before camp our entire family enjoyed a family reunion in New Mexico, another wonderful respite from our crazy year. (See photos above.)

David is very involved in our local American Cancer Society Relay for Life, which is coming up Sept. 18. One of the ways he raises money is by doing his own swim-a-thon. He did his swim yesterday and swam 7000 yards, which is 4 miles! He has nearly raised $2000! If you would like to put him over the top, please join him.

Ian will also have a significant role in this year's Relay. He is Honorary Chair and will be giving one of the opening speeches! And we will walk the survivor lap together, the thought of which brings tears to my eyes already.

My news is that I will have another MRI and see my surgeon Mon., Sept. 13. It would be wonderful if the MRI showed nothing growing after all, but I expect we will set a surgery date at that time. Meanwhile, I am feeling an almost desperate need to clear the clutter out of my life and have a lots of stuff set aside for a garage sale this Sat. There's so much to do to get ready, I'm not sure how I'll manage. But, whatever happens, I will get rid of a some of the clutter in my life. Yeah!

Please also keep my 22 month old nephew, Teo, in your prayers. (Teo and his Mommy and Daddy are with Ian and I in a photo above.) He is in the hospital with a nasty viral infection that caused such a bad fever he had a seizure. On top of that, my sister-in-law Pinar twisted her ankle badly before he got sick and they are in Turkey while my brother Melborne is back here in the US. It's so hard to be separated when needs and worries are so great!

Thank you all for keeping us in your hearts. You are a blessing to us! Love, Natalie

Make a Wish ~ Mythbusters

I promised a blog post when we went to Ian's Make a Wish event, so that's what this is. Friday, August 6, our Make a Wish friends came to present Ian's wish. They had a cake with the Mythbusters' picture on it and surprised us with the news that a limousine would be picking us up on Monday morning! Ian had already been getting excited about his wish and this made it even more exciting.
We did have a very exciting day on Monday, even though the limo was delayed in picking us up. ;-) I am providing a link to Ian's post so you can see what he wrote - which shares his view quite well. You can see he's a fun-loving, goofy kid - and very lovable!
We are not allowed to post pictures from inside M5 or any of the Mythbusters, so you'll have to trust us that we were really there or come see us to view pics! There were 6 families there fulfilling their wishes. All of the guys were really nice. If you are familiar with the show, you'll know one of the hosts is a woman, Kari, but she was on location with a project, so we didn't get to meet her. The workshop is very cool, with lots of items they have created for the show and movies they have done work for every where. Basically we got to meet 4 of the hosts, Jamie gave us a tour of the shop, and there was a photo op and signing time for each family. Ian would have loved to do some experimenting with them, but that wasn't in the cards. They don't normally give tours of M5, so we are very fortunate to have done what we did!
After our event, the limo took us to the a hotel near the Oakland airport so we could fly out very early Tuesday morning to go to my folks place in New Mexico for a family reunion. That's where we are now, enjoying the view and family. Both of my Grandmother's are here. My youngest brother Melborne and his wife Pinar and almost 2 year old son Teoman are also here. Teo is great entertainment! My brother Michael will also be coming with his family, so we will all be together for the first time in a long time. This weekend there will be a large gathering, especially in honor of my maternal grandmother who will turn 90 this year. I am so grateful to be doing these wonderful things before tackling more medical stuff. It's a nice break. ;-)

We're home!

Ian had his final radiation treatment this morning and we are home! It's amazing that we are already finished with all 17 treatments, it's gone so quickly.

We spent the last 2 nights in the Ronald McDonald house again, and even enjoyed a larger room with a kitchenette. ;-) I took peaches from our peach tree and ingredients for peach cobbler with us. It was fun to make something to share with the other families in our wing.

Ian did art with the other teens on Monday night and we met Joseph, a 16 year old fighting Leukemia. Tuesday evening a volunteer came to play Bingo with us and another family. We had a small group, so everybody won! I got a Starbuck's card and Ian got an iTunes card. Pretty cool. Later we played Settlers of Catan with Maddi, Lindsey and Margaret. We really need to get this game - it's very fun and I'm thankful for our new friends who introduced it to us! We are praying 15 yo Maddi and her Mom Margaret hear good news tomorrow and they get to go home after their 100 days near the hospital due to stem cell transplant. Please join us!

Ian delighted his radiation therapists by showing up to many of his treatments wearing a clown nose or a silly hat. Yesterday he wore a scary Halloween mask with a pirate hat. He had nurses coming in just to take pictures of him! Then he had to figure out some way to top that for his final day. So, he wore the same mask and hat but put his red pillow case over the top so they would think it was just the pillowcase and surprise them again. It was a success. Need I say he endeared himself to his therapists? They even gave him a certificate of completion that says he completed his radiation therapy with "High Honors in courage, determination and good spirit." ;-)

We have been getting free 15 minute chair massages at the Cancer Center every day when we go for treatments, so we did our last ones today and left with hugs and good wishes. At least we have something to look forward to when we go back for Ian's scans on Aug. 23.

One thing I'm taking with me is a desire to register as a stem cell donor. There is such a need. I hope to connect a registration drive with our local Relay For Life in September, so watch for that and get registered!

I probably won't post again for a few weeks. I get a week at home, then I'm off for some singing conference time. Yeah! I get back, have a couple of days, then we have Ian's Make A Wish event - a day with Discovery Channels Mythbusters! Ian (and the rest of the family, too!) is very excited about that, so I'll probably post something about it. Then we fly to New Mexico for a family reunion! Whew, makes my tired thinking about it all, but it's all good stuff! THEN, I'll be looking at getting my MRI and addressing whatever comes next. ;-)

Blessings to everyone, Thanks for reading, praying, thinking of us, supporting us! Love, Natalie

Only 4 treatments left

We are finished with all but 4 radiation treatments and it looks like the last one will be next Wed., as planned, so we will only be here 2 nights next week. Ian and I are getting to know a few people better this week at the Ronald McDonald House and he has had board game players to enjoy. ;-) We'll even bring home a couple of titles we will want to pick up sometime! There are actually 3 teens in our part of the house right now, which is great.

Our day in SF yesterday was great. We really enjoyed the Academy of Sciences - it's quite a place! - and visiting with our friends was a wonderful treat.

We did see our Drs. on Mon. and Tues. this week. Basically, Ian will be considered in remission once his radiation treatments are finished - Whoo, hoo! We will do PET and CT scans Aug. 23 to confirm that he is truly clear of disease. Once again, the timing is working out so we have that the day before he leaves for a homeschooling camp for teens that he has been looking forward to all year. Thank goodness!

Some of you have asked how I'm doing. I am fine, although I get overwhelmed pretty easily these days. Every once in a while "my cup overflows" with stress and I do some freaking out. BUT, I have no symptoms from my tumor and we are just getting through Ian's treatments before we worry about my stuff. I will have another MRI sometime in the last half of August and then we'll decide on a surgery date. I'm really not focused on that right now, which is good.

I plan to keep updating, and probably backdating for a while, this blog. So, following this should be a good way to keep up with us.

Once again, thank you for all your thoughts, prayers and all you do.

Blessings, Natalie

Radiation is going well.

Today we had radiation treatment #11. We've also seen the Drs. and expect to finish with radiation July 21, Helen's 19th birthday. So we can go home that day - hooray! So far he has done very well with the radiation. I'm sure his energy level is down some, but not bad. The worst effect seems to be a very dry throat.

We are at the Ronald McDonald House this week. We were also here the first week. Last week we stayed with friends of friends in East Palo Alto, but it is very nice to be closer to the hospital and have the benefits of the RMH. I am grateful we have been able to go home on the weekends. It's a challenge to live away from home. We have gotten to know a couple of families who have a child with stem cell transplants who must stay within 15 minutes of the hospital for 100 days!

This is just a quick update and I hope to get more done later, maybe even back-dating some previous posts so people can see what has happened before.

I need to go now. We have an earlier treatment tomorrow and then plan to meet friends in SF to visit the Academy of Sciences. That will be a wonderful diversion.

Here's a blog Ian is doing.

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!

Chemo #4

Hello everyone,

First, just another big thank you for all your thoughts and prayers. I failed to get an email update out last week, but we did get chemo treatment #3. Ian had a very good week, riding his bike and exercising Tues. through Fri. He started having more pain over the weekend, though, and his hair is nearly gone. :-(

Today we had treatment #4. It was a long day and Ian was in quite a bit of pain through the day. We started pretty early this morning so we could stop and purchase a cabinet for the bathroom that is one of those things we have yet to finish on our "long term" remodel. We have a wonderful friend helping us get at least a toilet and sink in that will be near Ian's room. Anyway, Ian had more pain than usual and was a trooper to keep moving and having a positive attitude through the day!

Of course, we are hoping for a good week this week. We never know how these drugs will effect him as they overlap and interact. We do know that the lump on his neck can barely be felt by the Dr. - and what she's feeling might even just be the biopsy scar healing!

Thank you again for your concern. We are grateful for the great community around us!

Love, Natalie

Chemo delayed

Good morning everyone,

Although we have had a very easy week, with very little pain medication, and Ian's lump is nearly gone, the blood #'s are down and the chemo will have to be delayed. It's actually just one #: the absolute neutrophil count, for those who know what that means. We will check his counts again on Wednesday and hope for a Thursday chemo treatment. This means everything will move back so we can get back to a Monday schedule, ultimately extending treatments another week. It feels like a setback, but I guess having those #'s drop is not unusual and we continue to learn to expect the unexpected. ;-P

We continue to be grateful for all the great thoughts and prayers coming our way.

Much love and blessings sent out to you all, Natalie

A little more news

Hi again,

I guess I must have been pretty wiped out last night when I sent our update because I forgot two significant things!

First, the most fantastic news is that the tumor on the side of Ian's neck has already shrunk considerably. Again, it was obvious once I'd really stopped to look!

Second, David folks met us at Stanford yesterday and we went to lunch together after the chemo. That was so nice. Ian really perked up when his Papa and Nana walked in where he was on the IV line. ;-)

And, this morning he woke up hungry and feeling really good. He's looking forward to having some friends over today. It's wonderful to have a break from the pain and nausea and we feel like we have our boy back!

Love to all, Natalie

Chemo #2

Hello to all of our faithful friends and family,

Today we took Ian for another chemo treatment. Although I would definitely not say "2 down 6 to go" like we said "1 down and 7" to go last week. Over this past week we had the eye-opening experience finding out what the side effects of chemo are like. Ian was pretty miserable quite a bit of the time with nausea and joint pain. He especially had pain in his jaw and teeth and had only liquids for 3 whole days, including Easter.

Needless to say, I (Natalie) had a rather emotional week as well. It's very hard to see your child suffer, as I'm sure most of you know.

After our visit with the Dr. today, and asking lots of questions, we feel better prepared to cope with the side effects we will face next week. So, we are hoping for a better week this week. Come next Sunday I will feel ready to say "2 down and 6 to go" or even: where a quarter of the way through!

Thank you again for your love and prayers. We appreciate you very much!

Love, Natalie and David

First Chemo

Hi there,

Here's the news on Ian's chemo yesterday. The short is all is well.

The long is we left at 7:10 am and got home at 10:15 pm.

We arrived in time for Ian's blood draw to check his numbers. No needle since there's a PICC line - one good thing.

We met first with Dr. Newman and Dr. Link (he's the service chief (head?) of pediatric oncology) who went over all the chemo meds and other things. It's confusing, but essentially they're going back and forth between some of the meds to maximize effectiveness and minimize damaging heart, lungs, etc. I think Natalie will be sending you a complete list of all the meds, Dad. Dr. Link seems like a good egg and though Ian was tired, he joked with him some!

After lunch we went to Pulmonary testing Lab. Ian had a complete, 1 hour long, pulmonary function test to create a baseline. He had fun doing that and the technician enjoyed him, saying she'd never seen anyone come up with so many ways to use a nose clip!

After that we went back to oncology for the chemo and waited. And waited. We found out that not all the circling and signing had been on the treatment plan forms earlier, so we had to do that, twice. Plus, even though they knew we were there, Ian's name didn't get put up on the board, so after 90 minutes we finally went back and then waited a bit more. Sigh.

First anti-nausua med, then they come in all gowned up, covered head to toe. Why? We wouldn't want to get these chemo medicines on our skin, very dangerous. (And they inject them into Ian!!!) I know this is how it works, it's just a bit shocking at first. Ian just read his book throughout. Then they changed the dressing on his PICC line, using adhesive remover and some skin protection cream and put a stretchy cotton thing over the whole thing.

Since it was now 5:30 we went to Max's Opera Cafe for dinner. Ian really wanted to take Natalie there, but he complained of his arm hurting where the dressing had been changed. It got worse and worse. We ate quickly and went back over, but the Oncology Clinic was closed, so went to the Stanford ER. They pushed us through quickly for an ER, but we didn't leave til after 8. The nurse put cold compress on his arm til the Dr. came and that really helped. The Dr. figures it was a skin contact reaction to something in the adhesive remover and said the cold compress appeared to be the best approach for now, but not to let them use that same kind of adhesive remover in the future. Definitely!

So we blitzed home (2 hours). Ian got a bit nauseous at the end, a combo of the chemo and the windy road perhaps (normally he never gets car sick). I think we'll come home a different way from now on that's not windy. He slept well and looks good this morning.

One chemo treatment down, 7 more to go!

Love, David and Natalie

Getting a PICC line

Hello all,

We were up at 5 am to be at Stanford by 7:45 (made it!) and Ian started with a CT scan to the rest of his body that was missed last week, sigh.

While waiting for the CT, Dr. Neuman came to talk to us because we were not willing to have the PICC line inserted when we still hadn't heard final results and staging. She shared with us that as of now it's clear that Ian has no masses below his neck, but there is a small one opposite the side where the biopsy took place and also in lymph glands behind his face (sinus?). She was very reassuring and we agreed to move forward.

Then we met Dr. Donaldson and team (oncology radiation) who did another short exam and talked to us at length about the possibility of needing radiation after the chemotherapy. Ian was really tired at first, but pulled it together like a trooper. She, Dr. Donaldson, was clear that Ian's cancer is highly treatable and very likely will not need any radiation.

Back over to APU, Ambultory Procedure Unit, for insertion of the PICC line. There were an hour behind schedule so Natalie and Ian went to get a bite to eat while I went to check the car, which we saw hadn't been moved by the valet parking.

APU was really backed up and the procedure didn't start til 2 pm (2 hours late). After giving Ian a local they inserted the PICC line (purple!) which goes up his arm and ends just above his heart. Natalie was trained on how to clean and flush the line every day. Though I didn't think Ian would be able to handle this procedure with only a local (I'm not sure I could!) Ian handled it like a champ, though he complains that there's a tube sticking out of his arm!

Then off to Pulminary lab for a complete test to create a baseline. We were over two hours late and they were booked up, so we'll do it Monday morning at 9 a.m. when we come back to meet with team to have a final conference and then do his first round of chemo.

Natalie posted this last night on FaceBook: It's been a long day! But, we know Ian's cancer is low grade and only in the neck. He now has a PICC line for 8 weeks of chemo, starting Monday. Then, we re-evaluate and see if more needs to be done. Ian was a champ again and we are so thankful for a positive prognosis!

PS, the tire was flat and ruined, AAA put the donut on and I went to get a new tire. Tire shop pointed out that the front tires were unsafe and now we have 4 new tires! He did give us a good deal!

Test Day

David went with Ian to his day of tests on Friday since Helen and I were having our last rehearsal for this weekend's concerts we're singing in. I talked to Ian via cell phone several times through the day, which was great, and he really did handle it all well. Here's David's update:

Hello,

Just a brief update. I took Ian to Stanford Friday for EKG, Echocardiogram, CT scan and PET scan. Ian couldn't eat all day and stopped drinking from 11:30 till 7. It was a long day and he handled it like a champ. We went to Max's Opera Cafe for dinner, very good! We go back on Tues to get results and have another test and placement of a PICC Line. After that, Ian won't be able to swim until the PICC Line is removed...this is how they'll take blood samples and administer the chemo.

Ian's appears happy and well adjusted considering what he's going through. We're very thankful and blessed.

Our church and local community came over and supported us today by helping us deal with a yard run amok...truly a wonderful blessing. Perhaps we'll get some photos posted on Facebook.

Peace, David

Tests

Here's the latest in our journey with Ian,

We have a big test day tomorrow, the 18th. Ian can't have anything to eat after 8:30 since the scans require fasting. He'll have an EKG and echocardiogram (for a baseline heart evaluation), then CT scan (the higher resolution of the scans), then, at 5 p.m., the PET CT scan (with reactive dyes to ID areas of possible spreading). THEN he can eat!

We may also meet with the radiation oncologist. Next week we will have a Pulminary Function Test (a baseline for the lungs), meet with Drs. to discuss treatment and he will have a PICC line placed in his arm (NOT something he's looking forward to!) for the chemotherapy injections, which we expect to begin the following week.

The Dr. we spoke to today said she expects Ian is in a limited stage (though scans will confirm) and will undergo 8 weeks of chemo, then do a re-evaluation. If it's gone, there will be no follow-up radiation. Obviously, this is not a sure thing at all, but I was concerned we would have to go all summer with treatments and that may not be the case. Thank goodness!

We are very fortunate to have access to the leading facility for Hodgkins this close to us and to have such a curable cancer to deal with.

Our community has truly gathered around us. I am overwhelmed with all the weeds growing and work needing to be done in our yard. We put out the word and will have a crowd of people here on Saturday to help us get the yard in shape! One couple says they will help with some upkeep, too! The pottery class Ian and I have attended took up a collection to pay for 4 weeks of housecleaning for us! Wow. And so many people are there for us in so many ways. We are truly blessed.

Thank you all for being there for us, too, including all of you who will receive this note 2nd and 3rd hand! We are so grateful.

Love and blessings, Natalie

First Stanford Visit

I think everyone's prayers were clearly heard and felt today. We had a very positive day at Stanford, starting with beautiful clouds all the way down. We arrived an hour early and they got us started right away. Ian had a blood draw (he later joked with the Fellow interviewing him, "Yes, I've had this strange bleeding into needles and tubes lately."), exams by two Drs., a visit from a social worker, a chest x-ray and peed in a cup. The exams and chest x-ray show no other lumps or spots, but we will need to go back next week for CT and PET scans after Stanford's pathology lab confirms the Hodgkin's diagnosis.

There are still unanswered questions: i.e. strain, stage, treatment. Once we've had the scans know the strain and stage there will be a meeting to discuss treatment. Most likely it will involve weekly visits to Stanford for chemo.

I was impressed with the people and facilities at Stanford. Ian charmed the 2 Drs. with his positive outlook, knowledge of the disease and sense of humor. That's our boy! ;-)

Thank you again for your thoughts, prayers and love! love, Natalie

Diagnosis

Dear family and friends,

We just got back from seeing Ian's Dr. and the news is not good. Ian has Hodgkin's Lymphoma. They don't have the final pathology of what strain or what grade, but it is definitely Hodgkin's. We are assured it is treatable and the survival rate is very good. Apparently Stanford is the place to go for pediatric Hodgkin's and we've been given a Dr.'s name and # there.

Ian is in a bit of a shock, I think, though he is handling things pretty well on the surface. It's a bit of a challenge to be 14 and be told you have cancer when you feel basically healthy. We have a good relationship with him, but I know it's still a little hard to talk to Mom and Dad about how you're feeling. He probably doesn't really know how he's feeling himself.

I know in my head we will get through this, though my gut feels turned inside out - and our lives will certainly be turned upside down for a while. Thank you for thoughts and prayers. We appreciate them so much.

Love, Natalie

Waiting

Hello to everyone,

We have been impatiently waiting for news from Ian's biopsy and still don't know anything. But, the regular MD Ian sees called to set up an appt. to discuss the biopsy and it is set for tomorrow at 5 p.m. Between all the anxiety about having to wait, the fact that we are going back to the Dr. when I thought it would be the ENT and that the Dr. is staying after his scheduled hours to meet with us, I am pretty freaked. I'm trying hard not to pass my anxiety on to Ian - I even made him clean his shower and toilet today! But, I am so scared I don't know how I'm going to manage tomorrow. I am subbing for the afternoon, which is probably good. David's folks are coming this weekend, so I've been doing some desperately needed de-cluttering. And I've been trying to keep things as normal as I can for Ian.

Please pray for us tomorrow. Thank you, Natalie

Biopsy

Hello all,

Ian came through the surgical procedure well. The ENT told us he took

two pieces from the lumps to send to pathology. We should have a

preliminary report by Friday and a more final report sometime next

week. The Dr. said they were enlarged lymph glands. Although he was,

of course, not willing to speculate on what these lumps might be, he

was very reassuring that whatever this is, it will be treatable.

Thank you so much for your continued thoughts and prayers for Ian.

Love, Natalie

The beginning

Hi there,

I'm writing to let you know about a concern we are dealing with and would very much appreciate your prayers and thoughts about. I didn't write sooner because I haven't wanted to overreact - and am working to keep myself and Ian calm about this.

The night we came home from NM, David was sitting across a table from Ian and realized he had a lump on one side of his neck. Ian thinks it's been there a while, but it never occurred to him it was different from the other side. When you compare, it's quite obvious. I'm amazed we hadn't noticed it before.

We got him to a Dr. right away and have eliminated TB, a cat scratch disease, Mono, and general infection. He had an ultrasound last Friday which showed several solid lumps in the lymph gland. This eliminated the possibility of a branchial cleft cyst, which is what David had a couple of years ago and what it looked a lot like to us.

Today we saw an ENT who scheduled an open biopsy (Ian will have anesthetic and an actual piece of a lump will be removed, as opposed to a needle type biopsy) for next Tuesday morning, March 2. Of course he would not say what he thought it was, but the fact that Ian has not been sick at all and the area is not enflamed pretty much rules out an infection.

Obviously, we are very concerned and wish we knew more and could have the biopsy sooner. Ian is worried, but he knows he's a healthy person and is doing okay. Life is busy and he can continue doing everything he has been doing. We are grateful we've been able to do what we have as quickly as we have, too.

I love you all and hope you are doing well. Love, Natalie