Friday, October 3, 2014

What a week

This has been quite a week.  Started with some fun family fundraising and ended with some very high highs and some very low lows.  So lets start at the beginning.

Last weekend we headed up to NJ for the Central NJ NF Walk.  It was a great event and thanks to all of our incredibly generous friends and family, Team Logan has raised over $9,000 and rising (they are accepting donations until the end of the year if anyone missed it).  We are so very thankful for everyone that donated to this cause that means so much to us. And for everyone that came out (especially my brother and family that came all the way from Boston)  and walked with us, we were so honored to have had you by our side.  Congratulations to my sister for completing her first 5K run (which actually turned out to be a 6K)!!!

One highlight of our day was meeting a family that has been through such a similar story to ours, only a few years ahead.  They have come through exactly what we are going through and are exactly where we want to be, stable and off chemo!  Their story parallels ours from the location of tumors, to the time on chemo, to the older brother feeling the burden of having a "sick" sibling.  It was so great to hear their story and so touching to see this little boy want to connect with Logan on a level that not many other people are able to.

After an exhausting weekend, we came back home ready to face a new week and hopefully celebrate great news.  Sunday night, Logan woke up screaming in pain from his leg.  This is the 3rd time he has complained of leg pain in a month.  After getting him comfortable and a long night in bed with me, Monday morning came with no relief. He could not move his leg and spent most of the day crying/screaming at the slightest movement.  We were able to get him into the doctor Monday afternoon and found out that they are stumped.  An xray showed no damage or abnormality to explain the pain.  They were able to schedule us for an MRI of his legs for Saturday to see if they could find an answer.  Yup - 6 days in pain to wait for a possible answer.

In the meantime, they prescribed us a powerful pain medicine to help Logan.  After trying 7 different pharmacies, I was unable to get it filled and at this point in the evening, unable to get a different Rx to get us through the night. Monday night was screaming on and off every 30 minutes until about 2AM when we found a position that was relatively painless for him and he was able to get a couple hours of sleep at a time.  Tuesday, I was able to get the doctors to write a different Rx that we WERE able to fill and by 4PM (yes- 4PM thanks to the slow response from the pharmacy) we had some drugs to help reduce the pain.

Wednesday, still unable to stand, walk or otherwise move, we headed out bright and early for his brain MRI,  That was the MRI to determine if we could stop chemo.  Being through so many other MRIs there really isn't anything new to report except to say that he is officially over his fear of the sedation room.  Logan actually ENJOYED this sedation!  Once the mask went on, he had a grin ear-to-ear, took a deep breath and let out a relaxed "that's sooo gooood!!!"  THANK GOD!!!!

Thursday, with the in-laws down to help, we had our appointment to review the MRI.  The good news, the MRI was stable.  We are done with chemo!!!!  We will go in for monthly checks and port flushes and have another MRI in 3 months.  This will be one of the most nerve wrecking scans to date, as this will show whether or not Logan can STAY off chemo.  While they expect to see some regrowth of the tumor, passed a certain amount and they will have to consider starting it up again.

The bad news, Logan still can't walk!  While at the doctors, they examined the leg again only to reiterate, that, while they have seen some leg pain in other patients, they have never seen anyone taken out for as long as Logan has been.  Thursday evening we got a glimpse of some improvement, when Logan started moving his leg without pain and even crawled around the house a bit.  Thinking the worst might be over, I let Logan sleep in his bed again, only to have to bring him back to bed with me after the 4th time he awoke crying Thursday night.

So far Friday, Logan has been able to move around a bit but still complaining of pain.  While it is a major improvement, he still has a long way to normal and hopefully the MRI tomorrow will shed some light onto WHY this is happening.  I have a sinking suspicion that this pain will go unexplained and I'm not particularly happy with that outcome.  He has been through so much this week and without knowing why it is happening or if it will happen again, I don't think I will rest well.

So, while I would love to celebrate and feel great about our good news, it's hard to get there when dealing with a new twist in the story.  Logan loves to keep us on our toes.  If you remember back to the last MRI, we had a stable report, but with a new concern for an unknown mass on his liver.  It seems every good news met with a twist and frankly, I'm ready some some straight forward and uncomplicated news.

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