Sing of Your Glory Now

Written by Mardon Hickford. Posted in Uncategorized

Tonight, I am sad.  No, actually, I’m MAD! I’m heartbroken and MAD! Cancer… I’m SO mad you!  I’m mad that Jake has gone thru so much and still has so, so much more.  I’m mad because of what we are about to put him thru, that NO little boy should EVER go thru. On that point we will go round later.  MOSTLY……. I’m so very mad that you took another of our babies.  I’m so deliriously, tearfully mad!  I can’t stand myself, I can’t see the keyboard for all the tears, I’m so ANGRY! This much I tell you… I speak for all of us cancer parents… this makes us fight harder. Stronger. We will rally.  We’ll stand arm and arm and when the dust settles and our strength returns, we will line up and we will FIGHT you harder than you know. You won’t see us coming, much like the thief in the night that you are. We will come together and we will be sure that our babies are not lost in vain. We will share their stories, we will rejoice in their short and precious lives, we will PRAY! You break our hearts and instill fear, you bring despair and you steal the loves of our lives but what you don’t know, is that we are teaching our children about Love. We are teaching them about the One that is Light.  We are teaching them that you will not steal their spirit… that they will live on… painlessly, happy, and FREE!  We are teaching them that when they leave our arms, they will run straight to JESUS.  And that cancer…… WILL NEVER TAKE! Rest in love and perfect peace, sweet Sean. This song has been speaking to me all day. It’s beautiful and fitting.  Sing of Your Glory Now by Bebo Norman    

It’s OK To Cry, Tears Clear Our Vision

Written by Mardon Hickford. Posted in Uncategorized

J and capeNo easy way to start this… no NED. Not yet. I have to admit, we’re so very disappointed. Not in Jake, not in our treatments or Docs or in anything we have done or could do… just disappointed that Jacob must continue to endure all of this. Saddened that God’s will and mine just aren’t on the same page right now and that I can’t see where all of this is going. I like answers but there are none to be had in the great scheme of this disease. We are getting closer. Our Docs are very happy with what they saw. I believe by their excitement, that his results are better than what they anticipated and when we put aside what WE wanted, the news really is positive. But the bottom J and cape2line is… we are going to Dallas. Jake will begin MIBG treatment in a little over a week. There is a lot to do. There are lots of little

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details with the kids and back-to-school and travel arrangements that need to be worked out. There isn’t much time to wallow but I kinda want to. Some days it feels like a part of our lives are just gone. Lost. So tonight we might wallow a little and tomorrow, we’ll pick ourselves up by the bootstraps and move on. Here is what we learned today… there is still disease in his skull, one of his hips, the knee area that was our initial symptom of disease is still pretty dark, and there are still areas in the legs. The biggest praise… NOTHING present in the2013-08-14 17.31.41 liver! The spots are gone! And the origination spot in the abdomen where the tumor and adrenal gland were removed continues to be clear. There really are lots of praises with these tests. It was a week full of zig-zags. We went in Tuesday for Jake’s bone aspiration only to find that his platelets had dropped 30 points and without a transfusion he couldn’t have the procedure. We jumped that hurdle and yesterday when they placed the IV, it had issues. We actually had to take him off the scan table and back to the room to work through that. His little veins are so done. We pushed thru and it worked for us eventually only to find that it had blown today when we were ready to use it again. We had to go for the other arm. It didn’t want to take at first either but with a little digging it finally came thru. (I just want to cry as he screams while they have to dig in his veins to get them to work.) Today, we tried something new for his MIBG and didn’t sedate him. It was a lesson. It was 50 minutes and he did well for a good part of it but when they had to tie his arms down, his head straight forward and bring that machi2013-08-15 15.30.09ne about an inch from his nose, he lost it. And quietly, I did too. He’s not quite ready for that one without sedation. If that part of the scan was a couple of minutes it would be fine, but it was twenty and he’s only five. He recovered and tonight he’s a happy boy… all is forgotten because of a special trip to Toys R Us from a very special little friend – thank you Eli! So now we keep trekking along. I ask for prayer over our trip to Cook’s Children’s Hospital on Monday. We will go for the day to 2013-08-13 10.03.49-1meet our team there. And here’s the BIG ONE… please start praying over Jakey’s Blankedy. We found one that looks very much like his old one but so far he wants nothing to do with it. This could be the hardest part of this treatment as this is where so much of his comfort comes from and it won’t be in the room with him. I also ask you to continue to lift up our little friend, Sean. He is hanging in there strong and brave, and we are keeping the FAITH. Miracles happen! I don’t think we can ever express how much it means to us to have you all walking this road with us. Your continued blessings of your prayer and kindness just keep coming and we are strengthened by your love! I ran across this tonight – a little God Wink in my moment of tears and thought I’d share…

Worry does not empty tomorrow of its sorrow; it empties today of it’s strength. – Corrie ten Boom

And so I find comfort in these words and this is my song of choice tonight….

What Faith Can Do by Kutless. Wendy, this is for you too, my sweet friend… dreams that move mountains, hope that doesn’t ever end.


Written by Mardon Hickford. Posted in Uncategorized

Cam's bdayWe’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
Dr. Lyles

Dr. Lyles

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 honoredSean3 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