Monday, January 2, 2017

I’ve been thinking for several days what I should post as we transition to 2017. Even as pollyanna as I am, I can not pretend that what 2017 likely holds for us does not terrify me to tears. December 30th, 2016 marked five years that we have officially been battling medulloblastoma with Eli. New Year’s
January 2, 2012, waiting for surgery date.
Day was on a Sunday in 2012, and we had just learned that Eli had multiple tumors. I can’t believe it has been that long, and how much has happened in five years. A post below that includes something about Caleb is a good example of how long it has been. He was 3 and a half when we started.

Though, I do, honestly, dread 2017, I am so humbly thankful to be here facing it with Eli. I remember during that first treatment, months after the writings below, I told Melissa that I could not envision Eli ever being 12. You know how you think about your kids in the future, what they might do, or be, or look like. I had been told that five years was considered survivorship, and I was a distraught that I just could not envision him at age 12. With a 65% survival rate at his first diagnosis of high-risk medulloblastoma, how would he ever live five years to be 12 (this is before relapse two years later which has less than 5% survival rate for five years. He is three years into his relapse five years). So, to be here on January 1, 2017, with him sitting at my feet laughing and playing video games with his dad, and sister, I am reminded to be thankful for what is in front of me. During these past five years, I can think of three people (adults) that followed Eli’s journey and passed away unexpectedly, so, as I have said before, none of you, or your loved ones are guaranteed anything more than Eli is. We just happen to have a heads-up to what is coming, and know the importance of appreciating the day we are in. What a blessing that is! If you have followed Eli even for a little while, I hope that you have a new understanding and perspective of blessings.
January 4, 2012, the day before surgery, showing
his Betts the cars and buildings from the 7th floor
at Le Bonheur in Memphis. He had never been to
a big city to see that kind of real city stuff.
Unless you have been reading with your eyes closed, the guiding hand of Eli’s Creator carrying him above the fray, protecting him from the fiercest flames is obvious. Then to take the heart-breaking rejections, the many obstacles and closed doors we have come to face, and use them to lay our path to 2017, is the providential touch of the Designer, Creator, and Ruler of existence. It has always been my own prayer, from the very second of clarity under the weight of the sky, that Eli’s journey bring glory to God, and that his light lead others to Christ. It is my prayer that when Eli’s journey is done, Satan will crumble in relief of his defeat. So, as you read the following posts - which are actual Facebook posts from December 30, 2011 to January 8, 2012 - reflect on what you have witnessed through Eli’s journey. I am a Bible believer. I believe that the Bible is what history says it is, and I believe that science says God is what He says He is in the Bible. I believe the Bible to be our manual, our guidebook, and our invitation to heaven. And it is simple, and plain. Mankind has made it all “fancified”, and complicated with its own rules, fabrications,
additives and subtractives, always fussing about something that has nothing to do with the message. But, when you peel away those distractions and distortions, and reach the simplistic core of the Bible, you will see a loving God that is waiting for you and wants you to be with him in an eternal home. So, as you are looking forward to 2017, I pray that Eli’s journey has given you a desire to pursue heaven, or challenged you to brighten your own light, guiding others to heaven. If anyone in Eli’s corner would like to participate in a correspondence study with someone and learn about the “Good News” and how to get to heaven, you can send me a private message and I will make it happen. There’s nothing to lose doing it, it’s free, and easy, no strings. If you don’t believe in the Bible, and are curious about why others do, I can set you up there, too, also free, easy, and no strings.

The following are posts from the day Eli left home for the MRI that found the mass in his neck. I will add in italics if I need to fill in any background.

On December 30, 2011, posted to my personal Facebook page at 10:15 a.m.:
“Please, say a little prayer for my Eli today. Just found out that he is having an "emergency" sedated MRI done this morning of his head and neck. It was scheduled for Jan 9, but he continues to suffer on and off from nausea, body aches, and distorted vision, so they decided to get him in today via the emergency room. He has had a full palette of blood work done which was all negative. So, we are hoping that this will provide a "fixable" answer and get him back to the being the stinker that he is.”

(The MRI in Huntsville showed the mass, and Eli was put in an ambulance to Memphis. I was at home, and left in a car to meet them at Le Bonheur)


December 30, 2011, 11:09 p.m.:
 “I am at Le Bonheur Children’s Hospital in Memphis waiting on eli and vic. Their ambulance on the way here broke down about half way so they had to wait for a replacement and r a while behind me. But eli played angry birds while he waited so he was content. He will have surgery here then go to st judes. They have not said but im betting surgery will be in the morning. The kids r w my sister. After the surgery we will know more and have a game plan from there. I used my gps to get here but the
January 4, 2012, the day before surgery.
numbers were off from construction i guess so i got lost. A cop stopped me for doing 45 in 35. Then told me my plate was not registering. Thought i was about to be a made-4-tv movie but turned on the waterworks pretty easily. He said his friends kid had a brain tumor at 19 months old "didn't make it" he said (!?!!) then he helped me straighten out the gps and i asked him if it was a safe way to go - the boarded up warehouses and barbed-wire topped fences made me nervous - he said "ma'am, u ain’t safe no where in memphis". He was the bowl of sunshine my knotted stomach needed. Thank u all for ur constant prayers. Please maintain a constant flow.”

(Le Bonheur did its own MRI the next morning)

December 31, 2011, 9:45 p.m.:
“Friends, the news is not good. The mri indicates the tumor has spread to his spine and another part of his brain that is inoperable. I fear what 2012 has in store for us. We draw strength from your thoughts and prayers.”

January 1, 2012 at 7:47 a.m.: “A prayer group has been started (by Tanya Griffeth) on FB "Praying for Eli Williams!”. It is open, so please join it for updates.”

First post on Eli’s praying page: January 1, 2012 at 7:56 a.m.:
“I am taking the kids to Memphis in the morning to see Eli b/c we just don't know what he will be like when the surgery is over and I'd like for them to be with him some. Vic and I will switch off and
Visiting with friends, and family the day before surgery.
 he will bring them home and have some time at home himself before going back Wednesday night to be ready for Thursday (surgery day). We are trying to get him cleared to go the zoo, but don't have a lot of hope for that. Anyone who is interested in going to see Eli is welcome to come. If we can’t go to the zoo, we will just see what fun a hospital has to offer. Thank you all again for your spreading prayers for my little quiet giant Eli.”

January 1, 8:27 a.m.:
“Friends of Madison Church of Christ: Most of you may not see this in time. I do plan to attend church at Madison this morning. I had thought about going somewhere else b/c of the emotional impact of being there. But, if you know me well, you know about my OCD for routine and I believe my adversary is pushing every button I have. So, I will not let him, once again, control what I do, and plan to bring the kids as we usually do (yes, probably late). However, with that bold declaration, I must add an *. I will be hiding :) I'm sorry, but the rawness of the situation has made me fragile and with the continued stress of that has made me sick. So, I hope you understand, and also know that what you are doing for us in thoughts, prayers, all else, is holding me up right now. So, don't be
About a day after surgery, not able to sit up, or lift his head yet.
offended if when you ask Hg where I am that she says "She's hiding b/c she said she's tired of talking about it." We love you all.”

January 2, 12:38 a.m.:
“I've had several ask about Eli's siblings. They know everything and are processing it each in her/his own way. I don't hide my tears any more from them than I do from anyone else, which these days is not at all considering I do it all the time everywhere. Hg is nervous, so she talks a lot and trys to make jokes. Abbey asks a lot of questions, which I answer simply and directly. Caleb knows, too. Many of you know that even at age 3 he only has maybe two handful of actual words he uses, but he can express himself clearly. He loves to be asked to say the prayer. And in noises and sounds that only a mother can understand, I always clearly pick out “E-yi" and “boo-boo.”"

January 2, 1:48 a.m.: “Friends I am going to bed a stronger person. Thank you, and good night.”

January 2, 9:48 p.m.:
“Please continue holding eli up to the Lord. He will have another sedated mri in the morning sometime for an all body scan to see if there r tumors anywhere else. The first scans from hsv were just of head to shoulder blades. Please pray that the rest of his body is clear. We had a beautiful day today with him and the girls and Caleb. Plus, some of his friends from school. He was so good, like
Struggling with double-vision after surgery.
 normal I wanted to throw my hands in the air and say "nope! U guys have been real nice but i think we r just gonna go on home. Nevermind." I just didn't want the day to end. I will try to post some video when my phone has more juice. Vic is looking in to getting me a laptop so it will be easier for me to communicate.”

January 3, 1:56 p.m.:
“Eli has gone back for the MRI now. Probably won't know results ‘till in the a.m. Unless something changes, surgery will be at 7:30 Thursday morning and could be anywhere from 3 to 8 hours. Thank you for your time that you have dedicated on Thursday for prayer. I am in Memphis now w Eli. Vic will be coming home to bring the kids back and take them to dentist appts on Wednesday morning, then head back to here.”

January 4, 2012 10:38 p.m.:
“Dear Friends, Vic and I are here with Eli and we have had a good day, despite the MRI showing additional tumors in his brain. Eli had been so spoiled that he said "I think I’m living in a dream world." We have played and done anything we wanted to, and he has talked and talked more than I have ever heard him... probably b/c the girls usually take the floor. I don't even know how to express the humble gratitude we have for everything big, small or just offered you have done for us. There has been so much, and so many, that I'm sorry, I will never be able to individually thank each of you. But our only real request is that you be prepared to move a mountain tomorrow. And, I want you to know that I look forward to witnessing the power of God. I probably won't be back on for a while, or if I am, it will only be for brief updates. Please be vigilant during this critical time.”

January 5: 2:17 p.m.:
“Wanted to give an update. Eli is not "done" with surgery, he just finished the first round. We have learned that this first class facility had a special MRI that is in the OR. The doc worked on ELI, then was able to do an MRI with ELI still open. After seeing those pictures, he determined that there was
Sitting up in a chair after surgery, and getting mail!
 more that he could get to, so with Eli still there and ready to go, the doc went back in and that is the last we heard. He is doing well as far as vitals go. My tears today are from the heartfelt realization of how precious all of you are.”

January 5: 3:45 p.m.:
“Eli is out of surgery and we have talked with the surgeon. In general it all went as expected and well. The tumor was more extensive than the MRI showed, but pealed off except for a couple of spots on the brain stem. He does not think that Eli will have any mental deficiencies, but it is very likely that he will have vertigo and double vision, and possible some speech issues. The fact that the tumor was worse, doesn't change anything. It just means that the tumor was aggressive and that it is likely spread to other parts of the brain that the MRI did not pick up. But, he was going to have to have chemo and radiation anyway. Our next two big hurdles are: 1. that his body begins to absorb the fluid to avoid a shunt. The surgeon has said that the tumors spread via the cerebral fluid, so we do not want a shunt, which, if the body can not absorb it, will have to be disposed of via a shunt from the brain to the stomach. And, if the fluid is the initial carrier of the cancer then we do not want it carrying potential disease to the stomach. So, pray that Eli's body responds naturally to heal itself. Secondly, the pathology report as to what kind of cancer it is. Until we know that, we will not know our treatment plan. The report will be available Wednesday. I think that is it. We are positive and eager to see Eli. The power of God is palpable in this place.”

January 5: 8:38 p.m.:
“Vic and I are with Eli in a quiet room on the ICU floor just for extra watch. He just looks beautiful to me and I can't stop watching him. He has spoken (albeit groggish), answering questions, can move his arms and legs. He has thrown up several times, but that is normal. A cranial nerve specialist said that his facial nerves seem normal. He is sleeping a lot and getting steady pain meds. I'm just running out of ways to say thank you for your work today. Today was an amazing group effort and I was blessed to be a part of it. We've taken the first step and have such a long journey yet, but at least we seem to be going in the right direction. It was a good day. We are getting some sleep now.”

January 6: 11:21 a.m.:    
“Update: Before I give you a brief update on Eli, I just wanted to say Thank you to my ABS family, again, for the day they held in honor of Eli. ABS is truly a special place. When I was asked what was Eli's favorite color, I did not imagine what it was for... a toy car, a stuffed animal, etc. Did not fathom what I've seen in pictures. I’ve just been in tears seeing the kids dressed in their blue and am eager to show Eli when his vision improves. So, Eli today is doing ok for having had brain surgery. It was not a fun day, and we've been told it will get worse before it gets better. He has answered questions, moved his limbs, although he seems to have trouble with his left side a little, and he has stood up to potty with support, but not walked or sat without support. His double vision is very bad right now and he continues even tonight to throw up. They really want that to stop. He is in a lot of pain, and just cries and moans when he's awake. So, we are really leaning on your strength right now to continue your prayers. Please ask for quick healing, and for Eli's body to begin to work to dispose of the fluid that is draining around his brain, and ask that the pathology report come back with a known disease that has a treatment. Big hurdles yet. Thank you so much.”

January 7, 2012:
“Quick Update: Well, I have mixed feelings tonight about Eli's day. We've had some good and some "hmmm..." moments. The OT and PT came today and walked him to the hallway and back and he sat in a chair for 30 minutes and has held down part of a chicken sandwich for about 3 hours so far. He wrote his name and did a shape puzzle. So, sounds good right? But, Vic said he seems lethargic and wouldn't answer some simple questions, like the names of his sisters. That was what he was kind of doing when I left. That is one of the signs that they are watching for for the fluid build up. So, please, be vigilant right now. I think Eli's body is trying to work to filter and circulate fluid, but I think it is struggling. He continues to be in a lot of pain, understandably. But, we need his body to respond. Thank you for continuing to go to God on our behalf.”

January 8, 2012:
Update: I'm in Memphis w/ Eli, having switched w/ Vic. I'm going to focus on the positive today. Eli is sitting up with a little support for his head. He is eating regular food. His CT scan appears to only show normal post surgery swelling. (which doesn't put us out of the clear for the fluid build up b/c his body may not have had time to make enough fluid to build up since he just had surgery, but it's promising). he is struggling with his left side, balance and double vision. He is in a lot of pain, and he is very homesick. He is a homebody and likes being at his house. It was hard to walk out of the door one morning to just go to the doctor not realizing that you were not coming home for a really long time. And, he's tired of it and it's pitiful. But, we soldier on praying for continued, healthy healing. The biggest thing today is that the pathology report came back and the cancer is called medulloblastoma. Until we talk to St. Jude, all I will say about it now is that at least we know what it is. I have resisted reading much about it yet b/c, well, I think I just want to trust a doctor talking to me about Eli specifically instead of general cases. So, I caution you googlers, of which I am one. But, we are taking this a battle at at time, and still focused on healing from the surgery. He is napping now, but was playing Angry Birds on his Kindle Fire that a friend gave him who knows what we are going through. I'm running out of ways to say that I'm running out of ways to say Thank you to all of you. It is so uplifting to read the wonderful posts.”
   





No comments:

Post a Comment

Note: Only a member of this blog may post a comment.