Thursday, October 6, 2011

Update 10-6-11

Alrighty, I have some revisions to make from my last post. I have clearly misunderstood what is going on with Brian and his scans. (Even though I asked a million questions and got a copy of the report to read myself, apparently, I still didn't understand how everything fell down.) I was going to delete my entire last post but sometimes I like to go back and read what we have been through and see how God has carried us through some pretty tough stuff. The emotional parts of thinking one thing and finding out something different from week to week are all a part of the chemo process for us. There are lots of ups, downs and all over the place moments for us. Our pastor has recently preached about how just like the Israelites were told to remember what God has done, we should look back in our lives and see how God has worked. He called us to remember and not forget. Every so often I read our blog because I do tend to forget. 

  Here's what we learned today: Brian had scans done in April of 2010 and those scans gave us the green light to have his port removed and be considered "completed" with treatment. In September 2010 Brian started round two of treatment because of a recurrence. In November of 2010 he had a set of scans (he is suppose to get them every three months) and then a few weeks ago he had some on Sept. 14, 2011. The Sept 2011 set of images are the ones that revealed a lesion on Brian's left femur. Apparently the Radiologist went back and compared them to the April of 2010 images. Those set of images did not reveal anything because that specific angle or rotation (whatever he said) was not included in the April of 2010 images. The November 2010 images were the ones that when the Sept 2011 images were compared they could see that the lesion was there only we didn't see it in Nov. 2010 b/c it was not clear. It is entirely possible that the lesion was there in April 2010, we just don't have an image of that area. However, the Oncologist is saying that we do not know 100% that the lesion is LCH. It's just the assumption that all things point to and it probably is. But, we are not doing a biopsy because the knowledge that the lesion is or is not LCH doesn't change anything in Brian's treatment. The current level of treatment that Brian is receiving is "more" than chemo round one because of his immediate recurrence. So, if Brian were to walk in with a new diagnosis, presenting with LCH Multi System Involvement (what he has) the treatment that he is currently on is what they would do. Being that the lesion was probably there in April of 2010 (and definitely in Nov 2010) Brian's almost immediate recurrence is because he was treated as a single system involvement and was only on chemo for six months rather than a full year. (Six months would be the road map for round one of chemo. Brian was actually at seven months because of missing some treatments b/c of being neutropenic.) Again, I have so many thoughts...probably I should keep a lot of them to myself since I tend to reveal some of my sins and I should work on my patience, etc. but...while the initial thought might be frustration that the doctors "missed it" and we wasted some time, I can totally see God taking care of Brian (and us) from the beginning.
As our doctor reminded us today, some doctors don't even treat for single system. So, even though Brian probably had multi system from the beginning, he was diagnosed and treated for single system and he did respond well. What if we had a doctor that didn't treat single system and we waited several more months before we found out it was actually multi system and all the while LCH is destroying his body?! We didn't have to deal with that. Praise God that Brian was treated immediately and responded well, he probably just needed a year and not six months. Secondly, we were so emotional and upset about chemo round one as it was. I cannot imagine the blow it would have been to hear ONE YEAR from the beginning. I might have jumped off the roof of the hospital. (Not really, that was for Mrs. Julie W., our dear friend. She will "get it".) But seriously, six months seemed long, but I could swallow that. A year would have been paralyzing and depressing to hear. We were still accepting Brian's diagnosis. Remember we went from several "common" ailments to sitting in a Pediatric Oncology office being handed a large binder that says Your Child has Cancer. I wanted to throw the binder back at the doctor and nurse and scream "we don't need this!!" scoop up Brian and run out of the building. I see how God has lovingly guided us through our journey. HE continues to do so. I am also thankful that we have a doctor that doesn't see the need to put Brian through a biopsy just because. He acknowledged the results will not change the process, so why put Brian through it. We appreciate that.  
Please continue to pray for Brian and our family as we continue with treatment. We have chemo every three weeks followed by five days of steroids through March 2012.

Here we are at chemo today.

Waiting in the waiting room.

                                                        Checking his height.

                                                          His weight.

                                        His blood pressure.

                                         His temperature.

Getting the Lidocaine wiped off his port before being accessed.
                                      The tray of meds.

Brian did great today. I forgot to go by Chick Fil A and get  him a lemonade so he had to deal with the taste of the meds without his drink. :-( I will remember next time!!

Cute boy!!

We are home and Brian is napping. He's such a trooper.

Things that make me smile...
   I came around the corner into the boys room to be greeted by all these guys. It made me smile.