Do I Dare title this post "Yet Another Plan?"

I wanted to start this post off with a beautiful song that really sticks with me these days:

Smile though your heart is aching
Smile even though it's breaking
When there are clouds in the sky, you'll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You'll see the sun come shining through for you

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile

That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile

Sorry if that made you all teary eyed, its just how I am living my life day to day; or minute by minute in some circumstances.

We have had a good couple days. Keegan seems to be annoyed (as he should be) that his legs aren't working. We had to go from whats called an "in and out Cath" to a "Foley" yesterday. Not last night but the night before since it was set for us to insert the cath every 6 hours, he just got too full and was WAY uncomfortable.It was decided later that morning that we would just cath him and leave it it as to put him through less torture.

This weekend we are just relaxing, no radiation like almost everyday last week and no big plans for scans or anything like that. Some family is coming to visit today and mom might be coming tomorrow. The biggest thing I am looking forward to today is going to get cupcakes at The Flying Cupcake Bakery, ummmmm how I love cuppy cakes!!!

Our "plan" for the week includes the following:

• Monday: Radiation at o'dark hundred (aka 7:30 am) then probably being released to home/Bloomington
• Tuesday: We could either be home home in Evansville or starting Proton Beam in Bloomington. This is the part that is yet up in the air. It usually takes 2 weeks to get everything in Bloomington set up to start radiation but Dr. B has worked till midnight at least 1 night I am aware of to get things going for Keegan so we don't loose precious time. If we are home home I am going to get a new tattoo with my birthday money (I turned 30 on the 13th of July). I have already contacted my "artist" and have an appointment for Tuesday evening.
• Wednesday: If we aren't in Bloomington yet, we will repack, and get our bearings after my OB appointment. Not to put too much of our business out on the inter webs but we would REALLY like Keeegan to know the love of a sibling and since we are having a little more trouble than we did with him, I am going to see Dr. Mann about where to go next since its been 6 months of charting and "doing the right stuff" according to his nurse.
• Thursday: If we don't start radiation in Bloomington on Tuesday this is our GO day. We start our 6 week protocol and will be living at Jill's house in Bloomington.......

So that is the "kinda plan". Every time I say we have a plan something else happens and the "plan" is thrown out the window so this is our "kinda plan"

I am going to leave you this morning with a cute video I took yesterday of Ryan and Keegan playing peek a boo. Keegan was in an exceptionally great mood yesterday and giggled more than he has in a week or so, I got some of it on video:'

Peek-a-Boo! from Keegansmommy09 on Vimeo.

The Best Laid Plans of Mice and Men Often go Astray

Lots of things have changed since my last post. On Saturday late afternoon, after my mom and Ryan left to go back to Evansville, I began to notice Keegan had stopped moving his legs. I did some playing around with them; tickling his toes, running my finger up and down his leg, etc. He didn't move his legs and barely moved his little toes. I freaked out cause that is what I do and called the nurse. Well, she didn't come right away so I thought what the heck I will make him a bottle, slide a chair over to his IV side of the bed and feed him. As soon as I picked him up his little legs were dead weight. I then held him like I always to do feed him and he started to scream (from pain is what I am thinking). I went to put him back in bed and try to get him to weight bear on his feet-NOTHING, his legs were like jello. I then placed another call to the nurse to tell her to get in our room right away.

A nurse came in, I showed her my concern and ran to grab our nurse who was just finishing up her lunch. They started trying to get him to move his legs and NOTHING. A few calls were made to Dr. Shih and Dr. Ackerman and a flurry of Nurses, Residents and Fellows quickly came in to assess the situation.

Dr. Ackerman, bless her heart, ran up a couple of flights of stairs, performed a neuro check and said the decrease in movement can be one of two things. Either the tumor is growing more into his spine and compressing it causing him not to be able to move his lower extremities OR it could be from the swelling that the tumor is causing. Either way its a bad situation.

Dr. Shih came in a short time later with a Grim look on his face telling us he was stopping all chemo and we were moving on to radiation ASAP and restarting HIGH doses of steroids to keep the swelling under control. He doesn't want to keep him on steroids long because of long term side effects but we are trying to relieve pressure to this very sensitive area. ::On a side note, we not only are watching his legs but also his bladder and kidneys because with the loss of the lower extremities we run a risk of problems arising if he cant empty his bladder::

Dr. Shih called Dr. B, the pediatric radiation oncologist, out of Bloomington and wanted to get going on radiation that evening. The only problem being Keegan had just inhaled a 4 oz bottle and since kids are sedated for CTS, MRI's and radiation that posed a serious risk to aspiration when waking up.

A decision was made on Sunday that he would start "regular" radiation at 9:30 am on Monday morning in hopes to try to get some leg movement back. Time is of the essence and we needed to get moving. He went NPO at Midnight Sunday and we were down in the IU cancer pavilion at 9:30 Monday morning.

So as you can see "the best laid plans of mice and men often go astray. We thought we had a plan of attack and that all changed in a few mere hours. So what next is what you maybe thinking......Welll......

Today we are going via ambulance around 1 est to the Proton Beam Clinic in Bloomington Indiana to get set up for treatment, we will then come back to Riley where Keegan will get "regular" radiation Wednesday, Thursday and Friday morning. Relax on Saturday and Sunday while be monitored and one more round of "regular" radiation on Monday morning.

Hopefully after today and this week hanging out at Riley getting radiated Bloomington will be ready for us and we can leave Riley to head to Bloomington early next week. This is what he hope to happen.

We do know that his leg movement is time sensitive but the radiation will cause the tumor and surrounding area to swell before it starts to go down so we might not see movement right away. Dr. Ackerman is pessimistic about regaining any leg control at all and in a weird way I can handle that if we can simply get rid of this damn cancer.

The Buzz on Full Brain & Spine Radiation

Tuesday May 24th we went to see Dr. Douglas at the Proton Beam Institute in Bloomington Indiana. We knew going in that this would be a dismal appointment but felt this was a much needed step in our attempt to gain as much knowledge about our options as possible.

The clinic itself is wonderful. Its new, up to date, and generally you get a "homey" feeling. I even talked with a mom in the playroom whose little one was just diagnosed 4 weeks ago and just started focal radiation. They too see Dr. Shih and we were just chatting about cancer and Riley in general.

We got into our exam room and sat down with a doctor and a Resident. We discussed Keegan's past medical issues and current issues. We discussed things he is able and unable to do at this time and a general "look over" as to his current health concerns. They left, went out and looked at all Keegan's MRI's and scans and brought Dr. Douglas back to the room about 10 minutes later.

Dr. Douglas is a previous pediatrician, a previous Pediatric oncologist and now a pediatric radiologist. He seems to be a very brilliant man with lots of insight into medulloblastoma (he has been working with Pediatric cancer for 30 years).

Right off the top he warned us that doing full brain and spine radiation right now at this point in time will lower his IQ 30 points. That is ALOT and quite frankly, I was flabbergasted, but nonetheless we kept conversing. He said the longer we can wait on this full brain and spine radiation the better, just by getting him to 3 years old the difference in IQ effect is tremendous. Instead of 30 points it would only drop 20-25 pts. While that is still more than we would like, this is our best bet at beating this disease. Which I believe is still only 50/50.

So let me explain this IQ drop a little more. So what they are telling us is that he will be able to do what he can currently do at the time of the radiation. What will be a problem, will be gaining future knowledge, functioning, and life skills. So if we can get him to a walk, talking "average" toddler state before we have to radiate, he has a better chance at a more "normal" life.

This is the most severe side effect of this type of radiation, and the biggest factor as to what we decided to do. The doctor assures us that he won't loose his personality and when asked about his quality of life he couldn't really say because that is all Keegan would really know. He wouldn't remember the "before radiation" days. I don't know how I feel about this, yea its good he will not remember how he "used" to be, but not being able to really determine what kind of quality his life would be for however long is real tough.

Some other side effects of Proton Beam Radiation are inability for the spine to grow correctly thus having a shorter torso. I don't think its anything major per sei but I think its enough they need to tell you it can happen. Since we would be giving a large dose of radiation to the brain and primarily the original site of the tumor he would most likely need growth hormones for the rest of his life because the pituitary glad would be damaged due to the radiation.

Cataracts are another side effect to worry about although Dr. Douglas said children's lens transplants are done pretty routinely and are quite easy, as to make us feel better about childhood cataracts. Last but not least and I am sure there are many more side effects I am missing but secondary malignancies are always a possibility and that is about 2%-4%.

Dr. Douglas, like ourselves, is banking on Sloan Kettering to help buy some time. He kind of agreed with us on our plan of action so far and thinks radiation should be our last route. The regimen he would need is 6 weeks of chemo 5 days a week. Not a really easy small regimen.

We feel more comfortable knowing these facts now and what will happen if and when this road is chosen. Like mentioned in the last paragraph we are trying everything else first but if and when it comes to this I think we both feel more comfortable knowing he won't loose ground with skills, they will just be tougher to maintain.

The best thing we can do for ourselves at this point in time is to educate ourselves as much as possible before making any major decision and we are praying for guidance and peace in whatever decisions we choose.