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