Monday, August 30, 2010

It's Good to Be Back

Today is one of those days, those days that you are very grateful for. I never thought I would say that about returning to the HEMOC floor of Riley Hospital, but yes, it does feel good to be back.

We checked in around 11 am in the outpatient center where we waited for about 4 hours to get fluids and our room had to be cleaned. Then we were hustled up to our home away from home, the fifth floor Cancer and Oncology Center.

Walking back through the double doors onto the unit felt good, I won't lie! Just a mere month ago our prognosis was terminal and our chemotherapy was stopped with pallative radiation being our only way to keep Keegan around longer. But tonight here I am, blogging from Room 26, our little corner room with a view that we have been in 3 times before.

There is something about returning to this place and seeing all the familar faces, hearing all the familar sounds and yes even sleeping on the same horribly Barney Dinosaur Purple chair bed that makes me feel at home. Weird I know, but when you think you have said your goodbye's to staff and fellow patients and their families, it's good to return and tell them the great news.

I applogize for my hiatus from blogging, between our big Rummage Sale that was had in our honor and the baked sale, chinese auction, and cookout we had this past weekend, there was not much time for blogging. Besides that I just want to cherish the great news with my family and my little boy!

We also had familiy pictures taken by the WONDERFUL Jessi Briner of Bee Elle Photography last night. From the couple of pictures I have seen that have been edited I am WAY excited, check this out:

Awesome Right?!?!? Anyway, I am gonna get back to my baby, he is about to start his IV chemo and I am STARVING!

I will update soon, I pinky promise! 

Friday, August 20, 2010

Remember: Doctors are only Practicing

I love all of our doctors a Riley, they have come to be part of our family. They hurt when we hurt and they are celebrating when we celebrate. With that said, can I just make the announcement that our doctors were WRONG. This is not to rub it in their faces but to show you that you should not just take their word for it, the are just practicing. Trust your intuition and go with it. You know how I mentioned back here that we had an MRI and it showed the tumor had grown through the worst chemo regimen possible?

Well, I am here to tell you that MIRACLES do come true! On Tuesday August 17th my mom and I made the long journey to Indy for a 3 hour MRI that performed multiple kinds of scans. We then had an appointment with our Oncologist where they checked him out before he was to start radiation on September 2nd. I knew we wouldn't have answers that day but went home with butterflies in my stomach. Around 8 am on the 18th I got a call from our WONDERFUL neurosurgeon. She knew I was sitting on pins and needles and began to tell me the best news I have heard in a LONG time. She said it appears that the area under suspicion is not tumor at all. They are not quite sure what it is, it could be contused brain, dead tumor, or just something else very weird. She commented that this is the best news she has ever been able to give us and it was sooooo true-Our God is an Awesome God!  Dr. Ackerman said most likely we would NOT do radiation and start chemo back up but that Dr. Shih would be calling me to discuss all this further.

About an hour later Dr. Shih called. You could tell he was very happy with the findings and basically in not so many words let us know that they compared acids from the "regular" brain to the area under suspicion, they were the same-if it was a tumor then you would see a higher acidity in the tumor region. The perfusion scan which showed the blood supply into the brain and surrounding area showed the exact same thing. Not increased blood supply to the area under suspicion.

Wednesday all the miracles and prayers my family and thousands around the country had been praying for  finally came true. Instead of contacting HOSPICE and making funeral arrangements I am now looking forward to chemo, the stem cell transplant and getting his central line and g-tube out. We still have a long way to go but instead of thinking of the short amount of time we have left we have been given and new chance to watch him grow up!

If this post doesn't strike any other chords with you, let it show you that a) MIRACLES DO COME TRUE and b) Doctors are not god and only "Practice" medicine.

Monday, August 16, 2010

Busy Days and Busy Nights!

Since my last post it seems I can't get a spare minute to sit down and write an "update" post. One of the problems could be that I am A.D.D.I.C.T.E.D to Nip/Tuck. In 3 short weeks I have spent all my "spare" time watching Seasons 1, 2 and am currently on 3-I LOVE it, it is my getaway! Or it could be because I am out and about shopping with my sister trying to help her find a white dress or cute white tank for our family pictures that Bee Elle Photography  is going to any who I apologize for the lack in posts, we are enjoying our time at home and LOVE being able to take Keegan out mask less, he likes it so much more!

I meant for this to be an update post, of everything that has happened since the last post BUT instead I have decided that I need to reach out and once again ask ALL my friend, family, and people that LOVE us but have no idea who we are to pray. I ask that if you pray, you pray with every.single.ounce.of.your.being.

Tomorrow is D Day, or should it be M Day....we are having our 2nd MRI tomorrow to decide for sure, 100% without.a.doubt that what is in his brain is tumor and nothing else. They are using the original MRI machine that was used during the original brain tumor diagnosis to compare clean, clear images; why they didn't do this this past time I don't know. They will also be performing a perfusion scan and a fiesta scan to check as to what the tumor is made of and the blood supply (if it really is a tumor). My prayer, and the prayer I hope you all pray for us today and tomorrow, is that what they saw almost a month ago now on his MRI image was just "something" else, not tumor at all. 

We will arrive at Riley to check into same day surgery around 10:30 am Indy time, from there we wait until 12 when he is taken back for an hour and half MRI sedated of coarse, and then we see the Oncologist; but don't know whether he will be able to give us results or not.

I know I ask a lot of my readers sometimes, and I understand if you don't pray and aren't religious, but I am praying, and I am religious, and I want God to intervene and perform his miracle now more than ever-are you with me?

Wednesday, August 4, 2010

The Difficult Journey to a Decision

It was a week ago yesterday that we got the news that shattered our already broken world. If you don't remember check this this post? So anyway, a week has already come and gone. It has been one of the hardest weeks in Ry and I's young lives.  So here is the story and the hard yet best decision that I feel we have made for our young family. I ask that you please don't judge our decision and/or leave me negative feedback as to why we have decided the way we have, until you are put in this horrible situation you can't for sure know how you would feel. With that.....

So after I sat in that lonely conference room receiving the worst new a parent could possibly hear, I had to stew in my juices until I could talk with Ryan. You see Ry was in the car on the way to Indy to spend a couple of days with us after his couple of days at home to work. I do admit I got online (face book of coarse) and confided in two GREAT women who I look up to dearly. Joanna and Karen helped me through the first couple of hours until Ryan could be by my side to cry with me.

After Ry got to Indy we started talking I told him that the MRI showed that Keegan's tumor had grown back. I told him how Dr. Shiy sat me down and explained to me that they are not 100% sure its Medullo anymore and not some form of a REALLY bad tumor. I showed him the drawing that the doctor had done for us showing us our options, these are what our options were/are ( I should add they were stopping chemo immediately and not going to continue the rest of the cycles).....

We could:
  1. Go Home-either with "help" or on Hospice (just for the record I HATE the word HOSPICE!!!)
  2. Surgery-We could go in and try to remove this "tumor" but as shown it will just grow back again and why put Keegan through another crainotomy and the recovery with much higher risk of infection.
  3. Radiation:
    1. Full Brain-NOT AN OPTION-this would drop Keegan's IQ immediately down 15-20 points-making him severe and profound metal retardation
    2. Focal radiation- This radiation would be a beam directed to the specific tumor and try to kill off alot of those tumorous cells.
  4. Oral Chemotherapy-(Maintenance) is what they call it. It would be the oral form of Etoposide (this drug is known to cut blood supply off to tumors.)
  5. Clinical Trials-We could look into clinical trials at any of the larger children's hospitals throughout the country that participate in them. I asked him to look into trials and second opinions at CHOP-Children's Hospital of Philadelphia, St. Jude, and Boston's Children Hospital.
Dr. Shiy also made mention that with all the genetic anomalies that Keegan has he thinks that ( and I am not quoting nor did he say he would every put this in writing) he should have never "lived" past the first trimester and should have miscarried. He has WAY to many genetic things off that don't really correlate with each other. Anyway so the whole time this is being discussed I am thinking its an even bigger testament to Keegan and who he is. He has fought to be here so we are going to go down swinging. I love this quote from Dr. Seuss that my college buddy Jenna wrote on my facebook wall:

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat.
...I'm all ready you see.
Now my troubles are going to have troubles with me!

So we have had a chace over the last week to speak with our neurosurgeon Dr. Ackerman and more to Dr. Shiy along with Dr. Chang the Radiologist out of Bloomington. It has been a very hard decision yet a very easy one, we are not ones to give us, neither is Kee so we have opted not to just go home to "die". We are going to continue our fight and I hope you are there to support us.
Here is the "plan":
We decided we wanted to try the proton beam radiation out of Bloomington Indiana. You can find more information here MPRI. It is going to be 6 weeks of radiation EVERY.SINGLE.DAY. We will be living in Bloomington during the week at Jills House, its in walking distance and seems very nice! It has been reiterated to us and we are keeping it in the back of our mind that if the quality of Keegan's young life is not worth the quantity we can back out of the treatment at any time. This was a relief to hear, just in case we don't want to finish.  This was the easy decision believe it or not...the harder decision lied it the what if realm.....

What if this thing is not tumor? What if this is something completely different? Dr. Shiy mentioned that he was not 100% that it was the original tumor coming back. So he said that we could possibly do a biopsy, my thought was sticking a big ole long needle into Keegan's head, sucking out some of the tumor in a syringe and then testing it.....I was WAY wrong, a biopsy on a tumor that resides in the ventricle would involve another crainiotomy and recovery time which would slow down the chance to get to radiation. He also said we would have a hard time convincing Dr. Ackerman to perform the surgery, he had already talked to her about it.

The next day Dr. Ackerman came by, we discussed it and she said she had talked the situation over with her colleagues and thought it really was not an option thus putting it off the table for us. SOOOOO then my thought (and I said this out loud) was...what if we are radiating regular old brain tissue...that is not good. So the Doctor left and the next day we were presented with another, lets call it, "Do you want to?" So the biopsy was out of the question but both Dr. Ackerman and Dr. Shiy kept thinking about our situation and neither on of them just wanted to radiate without being 100% sure. Answer: MRI's. They are not only going to re perform the one done last week on a better machine but they are also going to do a perfusion MRI (looking at the blood flow into his tumor) and a Fiesta scan where it takes some different images of the same tumor.

I should add we also "added" the oral etoposide to our "plan" after we are done with radiation in hopes that it also helps to kill the food source, if you will, of the tumor.

While I am sad that our journey has come to this, I hold hope that either our Miracle is in the second MRI or the fact that the Proton Beam Radiation is only offered in 6 places nationwide with one being only an hour and half from home in Bloomington. I cherish each day I have left with our baby, we don't know when will be his time but we are planning on fighting like hell and hoping for a miracle.

Because of the "terminal" label, I have applied for "wishes" for Keegan. I want to take Keegan to the beach so he can feel the sand, see the seagulls and feel the warm sun on his face. This is in the works whether it be with an agency or taking him ourselves. We have family pictures scheduled with one of the best photographers I know and we are going to have Keegan dedicated at our church with family and friends surrounding us.

I am still hoping for a miracle but planning on what is to come.....