Brody has started to have pain in his left leg

My heart sank this morning when dropping Brody off to school for what may be his last day of Kindergarten.  At first because I was thinking this may be his last day.  Then, I was saddened even more when I saw him limping and grabbing his left leg as he was trying to run to keep up with his brothers.  We saw Brody go through this as his tumor grew the last time.  As soon as I saw this I was definitely thinking, "Oh no!  The tumor is growing so fast already that it's pressing against that nerve again."   Brody was still limping after school and he says it hurts to run and when his teacher asks him to sit "criss-cross applesauce."  I have just been sick to my stomach all day.  I can't believe how fast the tumor is growing.  So scared. 

I was really hoping that we would be able to consult with Dr. Wexler before Brody is scheduled to start treatment on Monday.  Unfortunately, not all of his scans, tests, pathology reports etc. etc. etc.  had been received yet by Dr. Wexler in New York City from our hospital here in Toledo.   Dr. Wexler will not consult with us/provide us with his treatment recommendation until after he has received all of the tests etc he requested and then they must be reviewed by the team in New York City which takes a couple of days once they have everything.  Then finally they will contact us to schedule an in-person appointment.  If we were to wait to start treatment for Brody until after consulting with Dr. Wexler, it would delay Brody starting therapy another week at least. 

After seeing Brody already progressing to having difficulty walking and not being able to run, my gut is absolutely screaming that there is no way we can delay treatment.  We will proceed with starting treatment for Brody on Monday.  We will most likely be starting a "window" treatment of irinotecan plus vincristine (will find out for sure after Brody's MRI of his head results are back.  He is having MRI on Friday morning to verify no tumors in the head).    Brody took vincristine to treat his initial tumor.  Irinotecan will be new for him.   He tolerated the vincristine ok last time although the neuropathy was problematic but manageable.  Irinotecan has many side effects but probably the most pronounced is severe diarrhea.     A "window" treatment is a short duration of chemo to be used before the longer ongoing regimen that will follow.  Brody will likely receive the irinotecan daily for 5 days the first week and he will receive Vincristine once a week (on Mondays).  The second week would be Vincristine on Monday and no irinotecan during second week.  This 2 week cycle would repeat 3 times for a total of 6 weeks of "window" treament.   My plan is that during one of the weeks that Brody is not getting the irinotecan, we will travel to New York City to meet with Dr. Wexler for second opinion as to the next steps for Brody following the "window" treatment.  This plan was discussed between myself and Brody's oncologist here in Toledo today.  Brody's oncologist stated that he would call Dr. Wexler today (Thursday) and ask some further questions before committing to this as overall plan (Dr Wexler has been answering our doctor's specific questions but is not coming right out and saying, "do this).  Our doctor stated that he will give us the plan after Brody's MRI tomorrow (Friday).  So far as I know right now, the above described is our plan but could find out tomorrow it will be something different.  But it is firm that Brody will start treatment Monday.  He will have surgery to get his "port" placed again and start chemo on Monday. 

After school today, Brody had fun playing video games with his brothers.  He was getting frustrated trying to play with his brothers outside.  He was not able to run without it hurting and was walking with a significant limp.  He was just having a hard time trying to keep up with his brothers.  Fortunately, riding his big wheel was not hurting him and so he enjoyed that for quite some time.  He also came and hung out with me on our big bench swing and also had me giving him several "under dogs" on the play set as well.  While Brody and I were chillin' together today on the play set though he asked me something that I just did not know how to respond to and I wish I would have had something more brilliant to say in return.  But I still don't really know what would be best to say.   He asked me, "Mommy, if I die, can you die too so you can be with me?"  I started crying immediately.  Totally lost it.  I have been trying sooooo hard to NOT cry around Brody or his brothers and put on a brave front.  Once I stopped crying, I said, "Brody you're not going to die. Mommy is so sad that you have to fight cancer again.  It's a very hard fight but you are so strong and tough, you will beat it again."    Then he said to me, "But Mommy, it's in my leg already.  My leg hurts, it's already in my leg too."  Again, I CRIED!  Then I calmed down and said, "I hate that you hurt; it makes Mommy so sad.  When I am sad it's hard not to cry.  But Brody please don't worry about your leg.  The cancer is not in your leg. It's the tumor in your belly pressing against nerves that run to your leg.  This happened to you last time too.  But then you finally got enough medicine to shrink the tumor and your leg got better.  You are going to the hospital on Monday to start taking medicine to shrink the tumor.  The medicine will probably make you feel very sick for awhile but it will shrink your tumor.  When it's a little smaller, you will get surgery to get the tumor out.  Then they will give you more yucky, make you feel sick medicine for awhile after that to make sure no more tumor comes back."   He smiled and me and my sweet little boy cuddled and enjoyed each other's embrace.  Later in the evening  Brody was talking to his Dad though and I guess I didn't explain very well the first time that the cancer wasn't in his leg.  He told his Dad the cancer was in his leg.  Again I tried to explain it almost the same way.  And, Brody says, "what are nerves, Mommy?"   Then I'm thinking, "yes, a six year old really wouldn't know what nerves are yet, I guess."  So I explained this.  A few minutes later Brody was talking to his Papaw on the phone  and I heard him telling him, "I'm doing ok, it's just my nerves are messing with my leg."   I started laughing and said, "oh Brody, you are sooo cute."  

Since we got a weekend off before Brody starts treatment on Monday, we have planned some fun adventures for the weekend.  Tomorrow(Friday) after Brody's MRI, we are going to take Brody, his brothers (gonna pick them up early from school), and Lucy (our neighbor and Brody's best buddy) to African Wildlife Safari so Brody can feed the giraffes (one of his favorite things to do).  Then we plan to all go watch the move, "Avengers."  On Saturday we are headed to Great Wolf Lodge. We will play there all day on Saturday, spend the night and play there some more Sunday morning and head back home Sunday afternoon. 

Well, it is getting quite late.  I better at least attempt to sleep (extremely difficult for me lately) so that I will be rested for a weekend of fun.