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Mar 6, 2017 Latest post:
Nov 14, 2018
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
Wow! Honestly, I cannot come up with any words to adequately describe the absolutely AMAZING show of love and support you all have shown. Just when I think I have heard it all, something else happens and I am amazed all over again. So from the very bottom of our hearts, THANK YOU. We are honored, humbled and blessed beyond any measure that words can convey. I said to Jordy: Who knew an 11 year old could have touched so many people. Our neighbors, our competitors, our Orono community including classmates, teammates, you name it...You have all come together to be our supporters. Incredible, amazing, humbling and the list goes on.
So here is our story. On January 20th, Jordy took a hard fall in a hockey game. He did not play the remainder of that game but did return for subsequent games. Over the course of the last 6 weeks, he has not been himself on or off the ice. Many appointments, parent designated rest on a few days and still nobody could really declare concussion. On February 25th in Fargo, I noticed him shading light from his eye. After a bit of an emotional breakdown, he shared that "sometimes he sees two of things". We immediately pulled him from hockey and he spent the remainder of the weekend cheering his team on from the bench.
On Tuesday (2/28/2017), we took him to Children's Concussion and Neurology clinic. We got through the whole appointment and she was in agreement that it was not presenting as a concussion. Our go forward plan was to work with PT and a Neuro-Opthamologist to resolve his issues. We had one last test. It was a balance test and all of the sudden, there was a big red flag. He could not walk a straight line by putting one foot directly in front of the other. With his feet side by side, he could compensate but not one in front of the other. She then suggested a MRI just to make sure there was not an issue with his cerebrum which is responsible for balance.
On Thursday (3/2/2017), the MRI revealed a mass/growth/tumor in his brain that was preventing the flow of spinal fluid out of his brain which was causing enlarged ventricles and unacceptable pressure levels in his brain. They alerted me to this midway through the MRI so that I could make plans to take him to the hospital from there. I elected to drive him as I wanted a chance to talk with him and I knew he would think it was very strange if anybody but me drove us to the hospital. Upon arrival at the Children's Hospital in St. Paul ER, a number of doctors came and went all performing the same tests on him. True to Jordy form, on about the 4th time, he said "why do you all just keep doing the same test". The doctor responded "young man, we honestly can't figure out why you look, act and feel so good". He looked at me and said "his ability to compensate is unbelievable". When I told him he played hockey up until last Saturday, he laughed at me because he thought I was kidding.
He was admitted to PICU with a decision to install the "drain" on Friday. When Jordy found out the surgery was not going to be done until Friday, he asked the Dr. if we could go to the Breck -Delano game then and come back afterwards. Obviously, his request was rebuked. The surgery was successfully performed to install the "drain" on Friday morning. On Friday night, two more MRIs were conducted. They revealed that the mass was completely contained and has not worked its way to the spinal cord. All great news. Praise the Lord. On Wednesday (slight chance of Tuesday), they will perform surgery to remove the mass/growth/tumor. It is estimated at 3x4cm. They are confident that they can get it all. Pathology results will take 2-5 days. I have talked to many and any guesses at what will be the result is a guess right now but it is one of 3 types: astrocytoma, medulloblastoma or ependymoma. The latter two will require further treatment and the first should not require further treatment. Of course, all of this is "tentative" until the surgery is performed and we have the pathology reports. Wednesday will be a long day but we are confident that we are in great hands and we are fully trusting God's plan (doesn't mean I like it right now but trusting him completely). Tonight (Sunday 3/5/2017), they moved us out of PICU because he was "not sick enough" to be there. We will return there after the surgery on Wednesday but Jordy says this room is WAY better and he got to lose the leads for the vitals :). I do have a story to tell though :) The first night in PICU, our night nurse was a former hockey player who played for the Chicago Mission. They immediately hit it off. Sunday was supposed to be his last night as he was a contract nurse and was scheduled to return home to Milwaukee but lo and behold, his contract was extended for 2 days and we got him all 3 nights in PICU. He was sooooo awesome to Jordy. A true gift. A true blessing. Jordy said tonight, "its OK we have to move because Vince went home" :).
Jordy is physically doing great and he continues to make us laugh with one liners. He has moments of "climbing the walls" and frustration. The drain requires that he lay pretty still. He can move but then the drain must be shut down. For all of you who know him, pray for peace for all of us. Everybody keeps telling him that he looks/acts amazing. His response, "if I look so amazing, why can't I go home and come back for surgery on Wednesday?". As a family, we have adopted "one day at a time". He and I (Gina) have specifically prayed over and saved the following devotion on our phones which was shared by a dear friend and goes like this: Follow Me one step at a time. That is all I require of you. In fact, that is the only way to move through this space/time world. You see huge mountains looming, and you start wondering how you're going to scale those heights. Meanwhile, because you're not looking where you're going, you stumble on the easy path where I am leading you now. As I help you get back on your feet, you tell Me how worried you are about the cliffs up ahead. But you don't know what will happen today, much less tomorrow. Our path may take an abrupt turn, leading you away from those mountains. There may be an easier way up the mountains than is visible from this distance. If I do lead you up the cliffs, I will equip you thoroughly for that strenuous climb. I will even give My angels charge over you, to preserve you in all your ways.
Keep your mind on the present journey enjoying My Presence. Walk by faith, not by sight, trusting Me to open up the way before you.
We are eternally grateful for your support and prayers. Please keep them coming. The road will have bumps. We will thank God and continue to press forward. Already so many reminders that God is with us. God is for us. God is in us (given from another dear friend who uses that to get her through each and every day). Thank God for that fall in January which quite possibly never was a concussion but kept us digging until we arrived at this spot or this could have gone on longer and longer. Amen.
Humbly, Stewart, Gina, Lauren, Alex and Jordy xoxo