Posted 2015-03-03T20:32:00Z

Day 46- CONFUSION

The day after we got back from the hospital Redden was in unbelievable pain, and we had increased our 'on demand' pain medicine to the max dose. It wasn't working, and by the end of the day we were getting really concerned. When he cries like that and nothing, and I mean ABSOLUTELY NOTHING seems to comfort him, it breaks me. The straw that broke the camel's back was when he vomited up his ng tube. So back we went.

Hello Cancer Center. We live here now.

The ER stop before check-in went very smoothly and I was beyond thankful that each thing (IV, ng tube) went well the FIRST TRY. Thank you God.

Once we got checked in we went into pain management mode and he had to get upgraded to morphine. Finally, he got a little relief, and after the second day of morphine I even got some smiles. Up until then he had screamed almost every waking moment.

While in the hospital we got a look at the most recent MRI. I felt like I had been shot. The tumor is much wider than before. The reason his breathing has improved is that it's also shorter. So the overall mass size is the same, it's just shifted shape. The chemo has been effective in stopping most of the growth, but it still But that first glance, seeing how much wider it is now, was startling.

On Sunday we got discharged and went home feeling hopeful that we had the pain under control. But the next morning brought 3 hours of uncontrollable crying. His Doctor urged us to come back in and start our next treatment early as he's concerned the tumor is causing some additional issues that are giving him pain.

Today we did a GI study to see if he has any obstructions in his digestive tract. We are waiting on the results right now. This next week brings the next round of chemo, and a port placement surgery. This round of chemo will introduce different drugs to see if they are more effective on his tumor.

Going into this week my heart is heavy. I'm scared. Why isn't all of this working???? As a family we continue to struggle with our fractured status. The days where I see my children in the morning, and am gone again by the afternoon. The constant tiny clips of conversation between Brian and I as we both struggle with sudden single parent lives, each with our responsibilities, and assigned children. Our boys are being simply amazing and very understanding of our new life. I'm really proud of them.

We are actively seeking second opinions to make sure there aren't therapies out there that could handle this tumor differently. His tumor is rare, and it's been unresponsive is even rarer. We want to leave no stone unturned in making sure we find the right treatment for this guy. So far we are hearing that everyone would recommend the path we are on. We are comforted, but still scared. Red's team has grown to also include a Chiropractor, a Naturopath, and a Nutritionist. We're attempting to look at this holistically, believing that it's not just one strategy alone that will help him conquer this. Our team has been amazing and remains very patient with our millions of questions, and supportive of our approach.

I can't wait until the morning that I wake up and there's no medicine to administer. The need for coffee isn't because our total sleep time was 4 hours, it's just because I love it. There's no appointment to rush off to that keeps us from having breakfast as a family. There's no limitation on whether or not we can take Daddy out to lunch, as a family, in a restaurant. (With other people there!!!) I can't wait until the afternoons are lazy and filled with play. I can't wait to get back to the normal problems and chaos in our life as a family of 5. I can't wait for this cancer to be gone.

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Day 46- CONFUSION

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