“Scanziety”

We’ve been home for almost a week now from Jake’s last neutrapenic fever stay. Fortunately, this one was brief.  We were only in the hospital for 4 days. ONLY!  But we’ll take it.  I don’t know if I’ll have the chance to write much this week as it will be super busy so I’ll go ahead and fill you in and ask for prayer now.  All of Jake’s scans/tests have been moved up.  To THIS week! For those of our med friends out there, here goes… his bone marrow aspiration will be Tuesday, on Wednesday his CT scan and later that same day his MIBG infusion, then on Thursday his MIBG.  He will be sedated for two of these procedures. I HATE sedating him!  We will meet with the Doctors late Thursday to review the week’s results.  All of this is happening so fast because Jake’s MIBG Radiation has been moved up at Cook’s Hospital in Dallas and our consult and registration is Monday, the 19th.  If all goes as planned, Jake will be admitted to Cook’s on Aug 25 and will begin treatment two days later.  So here’s the thing.  We are praying for NED on these scans.  These feel like the biggest scans we’ve had yet… they tell us what the past 11 months have done……. so you can see… SCANZIETY! (Not my term… it’s very well used thru the halls of most hospitals).  We are praying for NED so we can go back to our original road map and bypass all of the MIBG treatment, and here is a little synopsis of why… the treatment that we are gearing up for is MIBG full body chemical radiation. It’s horrid!  It’s actually tolerated fairly well by the patient but it’s side effects are yet to be completely known.  It has been linked to later AML diagnosis’.  It’s administered thru an IV using MIBG contrast and seeks out the neuroblastoma cells (like MIBG scans do) and attaches to the cancer cells to destroy them. But it’s chemical radiation so he’s truly radioactive for a good 8 – 10 days.  He’s held up in lead based room with lead panels all around his bed.  The HazMAT team is close at hand at all times and the first 24 hours, I can’t enter the room. The second day, I may enter for about 15 minutes per 6-8 hours, wearing a geiger meter. As the days progress, I can be in the room more and more but I’ll be decked out in a radiation suit and will have very limited contact with him. There is a large observation window with an intercom. Worst part, he can’t bring his “blankedy”.  Anyone that knows Jake, knows that this will be pure torture.  What goes into that room, can never come out. It’s INSANE!  We are just praying for NED with these scans so we can go to BMT instead.  But we get the impression by all of the planning for this treatment that they expect to still find more disease than he can have for BMT.  So we pray, HARD! In the meantime, there are lots of back to school preparations to get done and we’ve been invited to the Dynamo game next weekend where they are featuring the Bald Is Beautiful project and trying to beat the world record with head shaves.  Big brother, Cameron, will be shaving his head in honor of Jake. Which by the way, Camman turned 13 yesterday… a full-fledged teenager in the house!  And look at all that hair!  That is going to be some major shaving.  So, as much as we have on our hearts to pray about, there are some exciting things to keep us busy.  Here is some more exciting news and THANK YOU’S…  THANK YOU to these businesses who are GOING GOLD with Warrior Jacob shirts in September……..  Dr. Lyles Orthodontics office, Dr. Boltz Chiropractic office, Cathedral Energy Services, Avante Laser & Medi Spa and TWFG. We are thrilled and honored that you will join us and take a stand for Childhood Cancer Awareness, along with your staff and clients.  If anyone else would like to GO GOLD in their office, contact me and we’ll set ya up!  For now, I ask you to PRAY for NED!  I ask you to pray over this week of scans and tests and sedation.  Jake doesn’t have a great history with sedation and we’ve had to deviate from the standard drugs to others so this makes us nervous. I also ask you to continue praying for our friend Sean.  Please pray for a miracle… they happen!  All the time!  Sweet, sweet Sean needs a miracle.  Here is his beautiful family… Sean with his parents and brothers – he’s on the far right.  “In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation.” Psalm 5:3