Updates (Sept 18-24)
Sunday (9/18) – Ian was feeling pretty good, though we were all moving a bit slowly in the morning, and we opted for staying in for some family time in the Word together. He continues to feel pretty good, and it’s been a blessing to see his appetite return (especially with no vomiting!!) I can’t tell if it’s his normal teenage boy appetite, or a side-effect from the steroids, but after watching him lose so much weight as he struggled with so much vomiting, I don’t even care, I’m just so glad to see him eating and keeping it all down!!
Monday (9/19) – Ian got off to a good start today, though he woke super early and had trouble falling back to sleep (probably due to the steroid). He used the walker to head in to the therapy center for OT, PT, & ST, which was the 1st time they had seen him out of the wheel chair! Major turn-around from last week! He did still tire pretty quickly during his therapies and was ready for an hour of down time for lunch before heading right back out to the Proton Therapy Center for today’s radiation treatment (#8, which leaves 22 to go!) His energy was pretty much gone by late afternoon after his treatment and we had a low-key evening, including early bedtime so we can get up early to head to Indianapolis for his 2nd week of low-dose chemo…
***Our family (all 10 of us!) will be “running” in the 1-Mile Family Walk as a part of the Hoosiers Outrun Cancer event on Saturday! from the website- The 2011 Hoosiers Outrun Cancer will once again support the important work of the Olcott Center for Cancer Education. Year after year cancer survivors, their family and friends, big teams, small teams, athletes, leisurely walkers and many volunteers gather to volunteer, honor, and remember. Through the Bloomington Hospital Foundation and Hoosiers Outrun Cancer patients and their families can learn more about cancer prevention, early detection, diagnosis, treatment, and survivorship. All services are offered free of charge.
Our family has a pledge/support/donations page set up here (click link), and we hope at least of few of you could spare a few dollars in support of this cause that has quickly come to mean so much to us… Thank you SO much!
Tuesday (9/20) – To Indianapolis this morning for his 2nd dose of chemo (of a 6 week course), and back to Bloomington for radiation after lunch- Tuesdays will be long for us!
*Please pray for safe travels!
Our travels were good- thanks to all who prayed! We were a few minutes late, due to a stop for gas and getting stuck behind a really long, really slow train. Once up to the clinic, things got even later, as we waited for over an hour and a half before I finally flagged down a nurse to see how much longer it would be- we were coming dangerously close to not being able to make it back to Bloomington on time for Ian’s radiation treatment appointment. “What time was your appointment?” Um, 10 o’clock… (it was then just after 12) “Oh, yeah, well, I’m not surprised with this clinic, it doesn’t run like what you may be used to.” What?! Ugh.
Weekly Vincristine is a pretty quick ordeal, so once they realized our urgency (um, yes, 2 hrs after our appointment time, and mind you, I did have all 8 children with me in that room), they got the show on the road. “His bloodwork looks good”, so I guess that’s good. I don’t know how good, as they didn’t give any details and I was too flustered to ask how good is good, or what does good constitute. I just heard “good” and that was good enough for me today!
The doc did note some post-nasal drip secretions in the back of his throat, and asked if he’s had a runny nose, sore throat, cough, etc… Nope, not that he’s noticed, and not that we’ve noticed- though we have noticed a couple sniffles/runny noses on a couple of our girls who struggle the most with their allergy issues. The nurse practitioner told me that “He cannot be around a live virus”, so we’re going to have to keep a very close eye on anything that even looks like a cold symptom around here.
Stocking up on Emergen-C and Liquid Sunshine (Vitamin D supplement) in an effort to keep all of the rest of us as healthy as possible!
With the time issues at our morning appointment, we were fortunate to only be 10 minutes late for his Proton Therapy, and of course today was one of the only days so far that they have been running on time, or even a bit early… (We’ve waited 1-2 hrs several times, things (like power blips) happen) He got right in today and got through Treatment #9 with no troubles.
His appetite remains good (he’s gained back 7 lbs, I know, most of us would be crying, but for Ian this is really REALLY good!! 
) and he’s been relatively headache-free for days now. It’s amazing the difference that steroid has made!
Wednesday (9/21) – Morning off of therapies (PT, OT, & ST). Nothing concrete on the agenda until the afternoon radiation- #10, when he’s done he will have two of six weeks completed!
It was so nice to sleep in and lounge around for a while! We enjoyed having only one appointment of today’s agenda.
Ian’s Proton Therapy happened right on time today, and he was in and out with no problems, and we have checked off another day and completed another week! It’s amazing how quickly time is flying by! I’m sure being crazy busy most days has something to do with it…
4 more weeks, 20 more treatments to go.
Thursday (9/22) – Today’s agenda: Physical Therapy, Occupational Therapy, & Speech Therapy in the morning, and Proton Therapy in the afternoon…
His Physical Therapy went great today. He saw a therapist he hadn’t seen in over a week, since he was in pretty rough shape (weakness, nausea, vomiting, severe headaches, etc…), and she saw a completely different Ian! His balance is getting better, so he spent more time on walking in PT. His ankles seem to shake and wobble a lot, and if that persists they may try some ankle supports for a while, until all of those leg muscles strengthen again and regain some better coordination, being able to work together, the way he wants them to.
Friday (9/23) – The only appointment today was his Proton Therapy! He had his weekly doctor visit where we discussed how well the steroid is working. We’re going to give it another week or so and then try tapering back just a bit. The idea is that we want to use the bare minimum does that is needed, as strong steroids have side effects of their own, especially after long-term use.
Today was his 12th treatment. He only has one more long treatment, where they radiate his entire spine and brain! His treatment plan is for 13 full treatments, and the rest of his treatments will be just the tumor bed area, which should only take about 20 minutes, as opposed to the 45-60 minutes that the full treatments are taking. Ian has hardly experienced any side effects at all, which is precisely why we chose this type of radiation treatment, except for a bit of redness, sort of like a sunburn… which, considering the laundry list of awful side-effects that he would probably be experiencing with standard radiation treatment to his entire spine and brain, well, we certainly can’t complain about a little fake sunburn!
We are all excited that Ian’s friend John gets to come down and visit for the weekend! What a fun blessing for them both!!
Saturday (9/24) – We got out the door right away this morning so our whole family, and Ian’s friend John, could walk in the 1-Mile Family Walk as part of the Hoosiers Outrun Cancer Event! It was cooler than we anticipated, and even drizzled for a few minutes, but all in all it was a pretty amazing event. John pushed Ian’s wheelchair, while Mr. Extraordinary pulled a big wagon with 2 yr old Joseph and 4 yr old Mercy. Baby Faith enjoyed a leisurely stroll, nice and snug in the Moby Wrap.
The afternoon & early evening was spent playing the Wii and enjoying some pizza, wonderfully NORMAL Saturday activities!
I want to thank everyone again for your thought & prayers!
This very hard, very long journey has NOT been a lonely one. Your thoughtful comments, e-mails, cards, and letters have meant so much! This world, that can seem so big and cold at times, has become so small, cozy, warm, and friendly for us, and we’re so grateful.
Thanking Him, for all of you!
I’ll keep adding to this post throughout the week, check back for the latest update…
Ian’s cancer story and updates
{ 4 comments… read them below or add one }
Our whole organization at the University of Central Florida located in Orlando, FL wish Ian the best. We are all praying for the best and raising money for him as much as we can.
Best wishes,
PPMS
We are still so amazed, and thankful for what you guys are doing!
Praising God right along with your family for the healing work that is taking place. So very happy for your “normal activities” today. What a blessing! We will continue to pray.
Judi
Isn’t normal, everyday a beautiful thing? When your life is upside down, that is what you miss the most… I am glad that your family is journeying together and that Ian is making such great progress and gaining weight. Woohoo!!!
Love you, friend. Praying for all of you as I go to bed tonight.