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sudden change

Gray was admitted to the hospital on Sunday to begin his final round of treatments. Over the next six months, Gray will receive proton therapy treatments. These treatments will not cause Gray to lose his hair again but they do come with a variety of other side effects including severe physical pain. Gray began the treatment Monday morning and will receive the first therapy treatment for four days. Hopefully we will be released on Friday. So far, Gray is tolerating the treatment pretty good. He has not had an allergic reaction to the concoction of medicines being put into his body, which is a good thing as that can be very serious, but unfortunately he is experiencing alot of pain. He is very drugged up and sleeps most of the day but we do have to press the button on his morphine drip approximately every 15 minutes just to keep him comfortable and give him some sort of relief from all the pain. While he is sleeping, he often wakes enough to cry and whine letting us know that he is in pain. One of the hardest parts of beginning this proton therapy is just watching our little boy go from full of life and energy (and awnriness!) at camp for the past month and then seeing him immediately turn into a sick and tired boy who can’t get out of bed. It tears our heart out to see the immediate change. We know that this treatment is necessary and, in the end, will only help keep Gray’s cancer and tumors from growing or returning but the very fact that Gray seemed so “normal” and his usual self only days ago and now seeing him sick and in so much pain is hard to handle. It’s hard not to sit in this hospital room and just feel sad and helpless. If you would, please pray for strength, peace and rest for Gray and our entire family. Gray is still young enough that he doesn’t understand fully what is happening to him but unfortunately we do! Please pray that we will all see this treatment for what it will be in completion and not what it is doing right  now. We also need REST! Coming out of camp and going straight into such a heavy treatment is both mentally and physically exhausting. We also ask for all the prayers you can offer, that Gray will continue to tolerate the antibodies and not show any signs of an allergic reaction. In some cases, when patients suffer an allergic reaction to this treatment it causes them to go into anaphylatic shock, which can be fatal. We know that the doctors are required to tell us all the possible horrible side effects but simply knowing this and then having to sit in this room and watch our baby boy, wondering if and when he may take a turn for the worse is enough to deprive you of sleep and a clear mind. The anxiety level is almost unbearable.

Gray has returned to his usual “uniform” of comfortable PJ’s and although his appetite still isn’t great we are happy when he eats (or licks!) anything! Here he is licking the cream cheese off his bagel! We truly thank all of you for your constant prayers and wonderful well wishes. It lifts our spirits to know that so many are thinking of us and praying for our little boy on a daily basis. We love each and every one of you.

“The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid? Though an army encamp against me, my heart shall not fear; though war rise up against me, yet I will be confident.” Psalm 27:1, 3

peach fuzz!!

Sorry for the delay in updates but we have been at camp for the past four weeks!! As District Youth Directors we run the statewide youth camp for the Assemblies of God and it runs for five weeks at the beginning of each summer. It’s alot of work but so worth it! And, of course, our boys love being at camp! With an unlimited supply of M&M’s and nachos from the concession stand, a basketball game always going on and a creek running right through the camp what little boy wouldn’t be excited!? Unfortunately, Gray isn’t allowed to go in the creek this summer simply because he still has a port in his chest and so there would be too much of a risk of an infection but he’s still having a blast! Gray has been doing so so well!! He has had so much energy and we are really seeing the old Gray shining through! And that includes both the good and the bad! But, hey, we’ll take some classic three-year-old tantrums if it means a healthy boy! The most visible proof that Gray is doing well and feeling good is that his hair is growing back!! His eyebrows and lashes are completely grown in and they’re just as thick and full as they used to be! Let me tell ya, that’s a relief to this mama! Gray’s hair is making quite the comeback as well! It’s so cute because daddy has taught Gray to call his new hair “peach fuzz” and so when someone points it out or makes a big deal out of his new locks he proudly states “It’s my peach fuzz!” It’s so good to see Gray looking like himself and feeling like himself. We did take a short break from camp this week to head back to Oklahoma City for some routine tests to check Gray’s heart, kidneys, bones and basically his entire body and all his organs to see how they are holding up to all his treatment and most recently his radiation. They are doing a biopsy on his bone marrow again as well. Those tests happened yesterday and today and so we don’t have any results yet but we are praying and hoping for continued good news! Next week is our last week of camp and then Gray will immediately begin his last round of scheduled treatments. He will be admitted to the hospital a week from this Sunday and will remain admitted for six days. This treatment is proton therapy and will last six months. These treatments are set up kind of like chemo treatments where Gray will be admitted for each treatment and each treatment lasts anywhere from 3 days to a full week. We’re not looking forward to the next round of treatments but we’re definitely relieved that there is now a light at the end of this very long, very dark tunnel.

It has been a bit strange to actually slow down and take such a long break from Gray’s full time treatment schedule. For nine months, we have lived and breathed cancer treatment and being at camp has been both a relief but also a mentally challenging road where we have almost been forced to look back at what this year really has been for our family. We have had almost too much time to reflect. Through it all, though, we are sincerely grateful for everyone’s constant and continued support of Gray and our family. Your prayers mean the world to us and on our darkest days we knew that we were only able to put one foot in front of the other because of those prayers. Please continue to pray for Gray and for our family as we enter these last six months of treatment. We met with Gray’s doctors today and they again had to go over all the possible side effects (both short and long term) of the proton therapy and it was overwhelming. I think going over side effects can be more draining then our constant lack of sleep! After Gray completes the next six months of treatment he will technically be “done” fighting his cancer but we can only pray that cancer will ever be something we can completely put out of our minds. As soon as Gray finishes his proton therapy, he will be monitored every month which will then extend to every three months and eventually he will go in for tests a couple times per year. We also ask for your prayers in transitioning from full time cancer treatment back to “real life”. It almost feels as if Gray’s 2nd and 3rd year of life disappeared somewhere into thin air and yet as soon as Gray is healthy enough we are expected to just jump right back into a normal 3 or 4 year old’s life and let him go to pre-school and even children’s church on Sunday morning! That may not sound like such a hard thing but our lives were turned so upside down this past year that simply leaving Gray in a nursery seems so foreign.

Again, thank you to everyone who has offered us their prayers, gifts, thoughts and well wishes over the last nine months. We covet every prayer you can continue to offer.

“But you, O Lord, be not far off; O my strength, come quickly to help me.” Psalm 22:19

Praise4Gray!! Let me hear ya!!

Over the past four months, Pray4Gray has raised funds for the Everaard family by selling t-shirts, wristbands and jewelry. We have also been blessed by our community to have churches and even public schools adopt Gray and his family during a variety of local fundraisers donating a precentage of their proceeds to Grayson. With the new year, we have been researching different fundraising ideas. Among our many ideas, we began discussing hosting a worship night! We contacted several well known worship leaders in an attempt to bring someone in who would draw a crowd not only to raise more awareness for baby Gray but also to raise as much money as possible for Gray’s continued medical procedures, hospital stays and surgeries. We have most recently been speaking with Jason Upton.

Jason Upton and his worship team minister through worship and contemporary Christian music. While they are rarely featured on radio or TV they tend to keep a low profile playing and ministering in both small and large church settings. You can learn more about Jason Upton on his website Currently, we are working with Jason Upton and his manager to put together a benefit night for Pray4Gray. Our worship night with Jason Upton will be called Praise4Gray and through this event we hope to raise awareness, funds and also pray corporately for a complete and miraculous hearing in Grayson’s body. As a non-profit we, unfortunately, do not have the up front funds necessary to bring in a well known worship team, like Jason Upton, and so we are looking for local businesses, business owners, companies, churches, ministries and simply people moved by Gray’s story interested in investing in Praise4Gray. In return for your donation, we will place your organizations logo on our promotional literature for the Praise4Gray night as well as on the program for the evening. Depending on the amount of your support we are also offering a variety of privileges that will benefit your business. We hope that you will take some time to visit and truly pray about investing not only in Praise4Gray but also in a miracle in the making for baby Grayson.

Praise4Gray is scheduled for Friday, August 26, 2011 at 8:00PM at The Bridge Assembly of God in Mustang, Oklahoma. Doors will open at 7:00PM. Tickets for the event go on sale Friday, June 10, 2011 and are being sold for $12 in advance. If you choose to purchase your ticket at the door, on the evening of the concert, they will be $15. We are also offering a group rate of $10 per ticket if you purchase a bundle of 20 or more! Tickets will be sold via this website. Along with the benefit concert, we also want to share with you another unique opportunity accompanying Praise4Gray. On the day of the concert, Jason Upton has generously agreed to hold an afternoon praise and worship workshop for anyone interested in leading worship or simply interested in a small group, one on one session, with him. The workshop will be held Friday, August 26, 2011 at 5:00PM. Tickets for the worship workshop are being sold for a minimum donation to Pray4Gray of $35. This price includes the afternoon workshop, admission to Praise4Gray that evening and premium seating at the concert!

If you are interested in donating to this special evening then please contact us via the “contact” section of this website and we will send you an information packet ASAP! We at Pray4Gray are so excited about the Praise4Gray event and about raising awareness for Gray and his family. I hope you will join in our excitement and help in any way you can! Thank you for taking the time to read about the Everaard family and I hope to hear from you soon. (Posted by Erika Knight who organizes events and writes for Pray4Gray)

sights and sounds of Gray!!

Gray completed his radiation treatments this week!! Whew!! We cannot even tell you how great it feels to finish one more portion of Gray’s treatment plan!! Gray endured the radiation treatments very well. In fact, they made him a bit hyper! Besides the lack of sleep and obvious rigor of being put under anesthetics every single day for two weeks and enduring having his port accessed and many many needle pricks Gray did awesome! For his last day of radiation treatmetnts all of the nurses had purchased Pray4Gray tees and wristbands as a surprise and were wearing them when we arrived. They also threw a party for Gray! He received two lego sets as gifts and they served shredded cheddar cheese and chocolate milk! Ha! They know Gray all too well! We truly are blessed to have such a great staff working so hard to get Gray back to health. They truly care and have been so nice to us! Thank you all! I don’t think it hurts, though, that Gray is such a little charmer and has every single nurse wrapped around his little finger!

Currently, we are at Turner Falls Camp Grounds preparing for our first group of campers to arrive tomorrow afternoon. Life goes on. We are looking forward to the summer and also looking forward to a break from treatment. Gray’s next scheduled tests are mid-June when he will go thru the full battery of tests again to see how his heart, kidneys and hearing are holding up to everything. We have to admit that these tests always make us nervous. Then in late June Gray will begin his immune therapy, or proton therapy. This is administered much like chemotherapy treatments but the side effects are expected to be a bit different. Gray will likely suffer flu like symptoms and also have some pretty severe pain. Apparently, the proton therapy attacks not only the protons surrounding Gray’s tumors but, at the same time, attacks his nerves causing widespread pain. He will be admitted for each treatment and will likely be on full time pain medication during the entire treatment. We will also have to go back to giving Gray shots at home. Those are all things that, for the moment being, we are trying to keep far from our minds. For now, for today, we are working! Youth Camp begins full force tomorrow and continues for the next five weeks! We are  eager to pour into the lives of Oklahoma’s students and know that while we are caring for our son and fighting the hardest battle of our lives we are also called to Oklahoma and called to it’s young people. Please pray for us as we do our best to draw on what little strength we have left to work hard, give of ourselves and lead each week of camp to the place God has in store. Our desire is His desire and we simply need the rest, physical strength and emotional strength to do our part. Also, please continue to pray for Gray! He’s such a fighter and has been in such good spirits lately! He’s so much himself and we couldn’t be happier about it! He has peach fuzz growing on his head and his eyebrows and eyelashes are all beginning to grow back in! It’s great to see him looking, feeling and acting more like himself! He does need continued strength, though, as we enter the next month of tests, treatments and medications.

As Gray completed his radiation treatments he was allowed to ring the bell in the hospital proclaiming to the world (or at least the hallway!) that he had completed this portion of his fight! You wouldn’t think something like the sound of that bell could mean so much but it truly does!

Thank you all for your continued thoughts and prayers. Thank you for not forgetting us or Gray. Cancer is such an isolating disease. The world continues to move on around you and we often feel like we’re standing still in the midst of the noise. We’re paused while everyone else moves forward. Cancer takes it’s toll on Gray’s body and on our hearts and minds. We completely trust, though, each and every day in the power of our God and in the physical and emotional healing He brings. Thank you for standing with us even if it’s simply in prayer, thoughts and spirit. We love you all!

“Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.” Isaiah 40:28-31

sorrow may last for the night

The past couple weeks at home have, to be honest, been a bit draining. While being in our own home always trumps the hospital it can sometimes be more difficult to be caring for your sick son at home by yourself while also feeling the pressure of all the other to-do’s that come along with a home and family. Mom’s will surely understand. Lately, Gray has been in very good spirits and has had alot of awnry energy! He’s been active at home playing, singing and dancing but definitely has moments that remind us he is still fighting cancer. Whether we’re administering medicine, refusing him food and drink after midnight because of an early morning procedure or simply cuddling him when he doesn’t feel well the fact remains…our baby has cancer. It can also be daunting how unforgiving cancer in a toddler really is! Most of the time it feels like we are either caring for “sick Grayson” or doing our best to raise and corral “3-year-old Grayson”. He seems to be either not feeling well or he’s a typical, all boy, pushing the limits three year old! Either way, our world never stops! Yesterday, Gray started his radiation treatments. We have to be at the hospital no later then 6:30AM which makes for a very long day. Because of Gray’s age he has to be completely sedated for each radiation session. Once he is actually asleep, the radiation only takes about 15 or 20 minutes! Both yesterday and today we were home by about 8:30 or 9:00 in the morning. Gray has thankfully done very well during his radiation thus far! He has cooperated with the nurses and doctors and honestly this has probably been the easiest part of Gray’s treatment plan, to date. We have been told that there are possible short and long term side effects of the radiation, like anything else, but so far Gray has handled his treatments very well! The possible short term side effects seem to be like any others. He could experience sickness and crankiness among other things. The long term side effects are the ones that are more concerning, though. While preparing Gray for radiation the doctors did another round of tests to be sure that all of Gray’s tumors were in the exact spots they thought the were, etc and when the results came in there was some news we weren’t expecting. The main tumor inside Gray’s abdomen follows his spine up further then they originally thought. It goes all the way up to his diaphragm. In our first talks about radiation the doctor’s only expected to radiate one disc in Gray’s spine but now that has changed to seven discs! Because the tumor is so high the radiation will probably effect Gray’s spine in ways we didn’t initially discuss. They say that it won’t effect his ability to walk or anything like that but they did tell us that it’s likely that when Gray reaches puberty he will not grow in height as tall as he probably would have had he not had cancer. In their words, Gray will most likely be “short in stature”. I guess in the grand scheme of things, we’ll take a shorter Grayson over no Grayson at all! The other long term side effect that is more concerning is the fact that the main body of tumor the doctor’s are treating through radiation is centered right on top of Gray’s kidney and so the likelihood that Gray will have kidney failure and/or damage is pretty high. That’s a bit of information we are simply tucking away until the day comes that we have to deal with it. We can’t handle it all at once. Like I said, Gray has done very well in radiation so far! We’re very proud of him! After they put Gray to sleep and take him back we’re not aloud to follow and so we have to sit outside the room. The light above the door comes on when they begin Gray’s treatment. It’s emotional and even takes my breath away to see that light come on and know what is happening to our son behind the closed doors. Although, he’s not in pain and we know that all of this is ultimately for Gray’s good it doesn’t make it any less surreal. It’s like a lighted reminder of our current life. Flashing. Reminding.

As we left the hospital this morning Gray, of course, HAD to have his chocolate milk!! And then when we got home he put on quite a silly show jumping into the front seat, sporting sunglasses and pretending to drive away!! He’s always a bit loopy when he comes out from under the radiation sedation and this morning inparticular he was very silly!!

Cancer most certainly has a way of changing you. I’ve heard it said that “when one member of your family has cancer the whole family has cancer” and we’ve definitely learned what that means. We’re still learning what that means. Cancer isn’t just a sickness. It’s not like someone in your home has a cold or the flu and you get a prescription knowing that in 7-10 days all will return to normal. Cancer doesn’t have a time limit or a reliable protocol. It doesn’t act the same in everyone and no one can answer all of your questions. They can’t even answer most of your questions with any amount of certainty. Cancer truly is life. Don’t get me wrong, we’re still a family. We don’t sit in our home just staring at each other, moping and sobbing that Gray has cancer all day but it still becomes very much your every day and every moment life. Cancer changes your perception. Cancer changes your thoughts. Cancer changes your concerns. Cancer changes your complaints, it changes your priorities and it most definitely changes your plans. Cancer dictates your choices and quite frankly wears you down further then you ever thought possible. While we know that the night is always darkest just before the sunrise, even the promise of the breaking dawn doesn’t make the current darkness any less dark. Our baby has cancer. Our family has cancer. And until the sun actually breaks over the distant horizon we will continue our stumbling walk through the night. Please, we beg, for your continued and constant prayers. Statewide Youth Camp begins in just a matter of weeks and youth camp is an event that is a full time job without the added schedule of Gray’s cancer treatment. We truly need strength both physically, mentally, emotionally and spiritually as we enter the next two months of our lives. Our career doesn’t stop because of cancer and the needs of the students of Oklahoma don’t go away because of cancer either. We want to continue to pour into the lives of Oklahoma’s young people, especially during camp, but in order to do that we ourselves must be full and overflowing. Please please pray! Also, we would appreciate your continued prayers for the everyday basics in our home. We need rest and peace. Please also pray that Gray’s radiation will continue to go as well as it already has! It is sometimes overwhelming to see that of everyone under our roof Gray brings us the most smiles and laughs! He truly has the faith of a child and we all can learn from him!

“I’m trading my sorrow, I’m trading my shame, I’m laying it down for the joy of the Lord! I’m trading my sickness, I’m trading my pain, I’m laying it down for the joy of the Lord! I’m pressed but not crushed persecuted not abandoned, Struck down but not destroyed, I’m blessed beyond the curse for his promise will endure, And his joy’s gonna be my strength! Though the sorrow may last for the night, HIS JOY COMES WITH THE MORNING!!”

precious time

I’m sure you’ve already heard but we are so excited to announce…GRAY IS HOME!!!!!!!!!!! There aren’t enough exclamation marks in the world to express, via type, how excited we truly are!!!! Being home is so refreshing and oh so relaxing!!!! Gray’s last week in the  hospital wasn’t great but it was better then the second and third week. Gray began recovering from his transplant side effects about a week ago. They took him off his morphine which was probably the worst to recover from. Coming off of his medicine Gray became cranky, aggressive and lost alot of sleep. On the up side, though, Gray’s blood counts were recovering at a really good rate and his mood gradually improved as the week went on. Gray did continue to experience some sickness up until a couple of days ago. That too made for several long nights and days and we were so glad when it was over. The end of last week the doctors told us that Gray would probably be ready to go home sometime this week and then when we learned it would be Tuesday we were literally jumping for joy while fearing every moment that the doctors would change their tune and tell us we had to stay longer. I think we were biting our nails until the moment we loaded Gray into the car and drove out of the hospital parking garage! We were finally FREE!!!! As we got dressed to leave the hospital Gray kept insisting that he wear his jacket. He was so adamant about putting on his jacket that we finally realized that when we checked into the hospital, a full month ago, it was actually cold outside!! Naturally, Gray thought it would still be chilly out and wanted to keep warm. We tried to explain over and over that it was actually warm outside but Gray didn’t believe us until we stepped outside. He looked up at us with an expression that said “Huh, you were right!”. The cutest part of our trip out of the hospital, though, had to be when Gray suddenly stopped halfway through the parking garage, put both hands on top of his head, wrinkled his bald little brow and looked up at us saying “Where’s my hair??” Ha!! All we could do was laugh! In disbelief of what we had just heard we couldn’t help but ask Gray what he had said! When he repeated the same question, with the cutest look of confusion on his face, we felt bad giggling again as we reminded Gray that he had lost his hair months ago. After hearing this, Gray simply shrugged his shoulders and replied “Oh! OK!” and kept right on moving toward the car! Huh! I guess it only took him six months to realize he’s bald…completely bald!!

Before we left the hospital, the Stem Cell Transplant Unit of the hospital threw Gray a “Going Home” party!! They made it very special even serving cupcakes and chocolate milk!! Gray’s favorite drink!! Gray wasn’t really in a party mood at first. He actually broke down into tears when we walked out of our room and he saw everyone lined up staring at him. I’m not sure he knew what to think. We finally got Gray to look at his party and he DID eventually enjoy himself but the nurses decided NOT to sing! We didn’t think that would go over too well…at all!! All of Grayson’s nurses were at the party. Even nurses who have treated him on the tenth floor of the hospital. Gray’s goodbye party was very sweet but we were so very excited to be taking our little boy home and to be reunited as a family after a very long month separated that it was kind of hard to enjoy those little cupcakes! Our own beds sounded so much better! We’ve been home now for a full day and there are no words to describe the emotion. Time and family, don’t ever take them for granted. We now have a week off before we begin preparing for Gray’s next round of treatment. In the next couple of weeks, Gray will begin radiation. His radiation treatment lasts twelve straight week days and each treatment will be an all day event. Radiation is outpatient but it will feel like being admitted all over again because we have to be at the hospital by 6:30AM each day and not only will Gray receive radiation but he will have to be put completely under for each treatment. Of course, this means that Gray could become sick again (not only from the radiation itself but also simply from being administered anesthetic every single day), he will most likely be cranky and upset after each treatment and he will also be susceptible to a variety of new side effects. Because of the location of Gray’s tumor, his radiation could (and we’ve been told most likely will) cause liver damage and radiation is also known to stunt kids’ growth. While those are serious side effects, we are doing our best not to think about them right now. We just want to get through the radiation treatments themselves and most of all we simply want to enjoy this week or two off!! We have to admit that it’s felt a bit strange so far being home. We don’t have to give Gray any shots or meds on a day to day basis. We’re constantly thinking “what meds have we missed?”, “when is Gray’s next shot?”, etc. and we find ourselves looking to our medication calendar hour after hour thinking we’re missing something. I guess that’s a good thing, really!!

We really can’t thank each and every one of you enough for all of your thoughts and prayers this past month. It was the longest month ever (to say the least) and really nothing made it any easier besides prayer. Please continue to remember us in your prayers in the coming weeks and months. We are so grateful and happy to be done with chemo treatments and Gray’s stem cell transplant but we still have a very long road ahead of us. There are months and months of treatment ahead and most of it has just as many possible side effects and long term effects as what Gray has endured thus far. We also ask for your prayers as we are getting very close to the busiest time of the year for us as District Youth Directors for the state of Oklahoma…Youth Camp!! Regardless of where Gray is at in treatment and regardless of what is going on with us personally or in our own home, camp is coming. We love camp and we love spending a month out of our summer ministering to the youth of our state but this year will be that much more complicated by Gray’s fight with cancer and by our constant battle to catch up on sleep. Please remember our family during this time.

“The Lord is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.”  Psalm 28:7

tiny hero

The past week has been long. If there were a word to describe a week feeling like a hundred years that would be the word we would use right now. After beginning to experience side effects from his stem cell transplant last week, Gray began struggling with stronger side effects over the weekend. On Saturday, Gray threw up and it  had blood in it. Sigh. Due to the blood being present Gray had to receive a platelet transfusion. Over the weekend, Gray also developed mouth sores and so was put on morphine every two hours. We knew this was only the beginning. Saturday night, into Sunday, Gray was up nearly the entire night in pain. He just moans and groans, unable to sleep. Then on Sunday, Gray’s fever spiked. While we had been warned that he would most likely develop a fever at some point this was definitely something we were most afraid of. A fever can mean so many things and can definitely lead to more devastating side effects. Sunday, Gray’s fever rose to over 101 and so the doctors had to access his port, take blood from his arm and swab his throat among a variety of other tests. Even though the doctor reassured us that all of Gray’s side effects thus far, including his fever spike, are right on track for all he has gone through and nothing is out of the ordinary it still doesn’t make it any less scary for us, as Gray’s parents. “Normal” or “routine” offer us no comfort whatsoever. While we waited for all of Gray’s test results to come back the doctors went ahead and started Gray on an antibiotic and increased his morphine to a full time drip. So much had happened and we had only made it through the weekend. Thankfully, Monday did bring a bit of good news. Gray’s culture results came back negative! Showing that everything was normal! The not-so-good news, however, was that Gray was still getting sick AND running a fever. We also learned, after the weekend, that Gray’s white blood cell counts were at ZERO! Yikes! Because his counts are beyond low Gray has developed small bruises on various parts of his body and even on his head. Gray has also lost what little bit of eyebrows had grown back during his break and he is really looking sick. There have only been a couple times that Gray has developed that “cancer look” and now is one of those times. He is puffy, has red eyes and dark circles. He just has THAT look. All of the meds that Gray is on combined with this lengthy hospital stay are making Grayson very very VERY cranky. Not that any of us can blame him. If we’re honest, we’re probably all a bit cranky! Through it all, though, we have definitely seen in our son something that we wish we had ourselves. Here is a tiny little man who is fighting cancer and yet still gets up out of the bed, reads books, plays with toys and simply moves around! There are days we ourselves don’t feel like getting out of bed and yet there’s our strong little son showing us what life is all about. We can only hope to have the strength and courage that he has. He’s most definitely stronger then we would ever be if we were in his place. Gray is also learning through his situation. He is becoming alot more compassionate! He received this stuffed bunny from another patient in the Transplant Ward and this week we found Mr. Bunny tucked into bed covered with Gray’s blanket and with Gray’s binky in his mouth! Gray had obviously been taking very good care of his little stuffed bunny!

The past couple of days haven’t been any easier then the weekend before them. Gray is not sleeping AT ALL and, in fact, he has his nights and days completely mixed up. Thursday night, Gray napped until almost 10PM and then stayed awake into the wee hours of the morning and last night Gray only slept a total of three hours! When the doctor came in today we asked if the abnormal sleeping schedule was being caused by his meds or his treatment or what. The doctor said that all transplant patients generally end up having sleep problems. We also learned that morphine doesn’t allow you to fall into a deep sleep. After nearly a week of horrible side effects and sleepless nights, we were relieved to hear even the slightest bit of good news today! Gray’s blood counts are finally on the rise! As of today, they had only reached 60 but the very fact that they have begun to recover is wonderful news in itself. Gray will soon begin being weaned off of his medications as soon as possible. The doctors even said that if all goes well Gray may be eligable to go home as early as late next week!! You have no idea how wonderful that sounds!! Home!! Gray has been begging to go home since the first day he was admitted and, honestly, so have we all. Gray is still extremely emotional today and can literally be laughing one minute and a sobbing mess the next but the light of home at the end of the tunnel is making it a bit more bearable. We had one more glimmer of recovery hope today when Gray asked to eat!!!! That’s HUGE!!!! Sure, he only ate ONE cool ranch dorito but we were beyond happy!!!! It may only be one chip but it’s a start!!!!

There’s so much that we want to say and yet we’re so exhausted that it’s hard to process our thoughts enough for even ourselves not to mention putting them down on paper. Our brains have literally turned to mush and we’re lucky if we even remember what day of the week it is! While the past 3+ weeks have been a whirlwind of stress, anxiety and even fear we just have to say again how strong Grayson has been. Sure, he’s had his moments, but his courage and strength are qualities that we not only admire about Gray but also hope to have more of within ourselves. Gray is not only reaching around the world with his story but he is also reaching us. Those of us who sit by his bedside day after day and watch him moment to moment. He is truly our hero! Please pray this weekend for Gray to get some sleep. Please also pray that as he is taken off of his meds that his body will react positively and he won’t have any adverse side effects. We would also covet your prayers for the rest of our family. While Gray is in the hospital life in the “outside world” goes on and jobs don’t stop. This weekend is a huge weekend as district youth directors as we are hosting and running a very large talent event for our entire state. This event takes up alot of time and energy and we would greatly appreciate your prayers for us to find the strength to give this weekend all we’ve got. We also need much more rest. Thank you all for your constant prayers and all of your support. It truly means the world to us.

“Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the the crown of life that God has promised to those who love him.”  James 1:12

on my knees

Well…there’s not too much to say besides that Gray is unfortunately beginning to experience side effects from his stem cell transplant. On Wednesday, he actually got sick in the afternoon but it was a one time event and he didn’t begin to feel sick again until last night. The doctors did tell us that the fact that Gray had thrown up, even though it was only once, was probably a sign that Gray was developing the “mouth sores” in his stomach. These sores are only called mouth sores because that’s the only place they can be seen but they typically occur all through a patients digestive tract. We believe they are first developing in Gray’s stomach. This morning, that speculation was pretty much confirmed. Late last night, Gray began complaining of a tummy ache and he whimpered and cried all through the night. Then this morning he continued to complain of a stomach ache and also said that his mouth was hurting. The nurses said that most definitely this is the beginning of mouth sores developing. Gray is also running a fever today. We expected an infection at some point. When they took his blood counts yesterday his white blood cell count results came back at zero. That was the goal with the high dose of chemo last week but it’s still shocking to hear. The nurses have said that if Gray’s fever reaches 101 they will have to access his port and take swabs from various locations to try and find what type of infection he has so that they can treat it right away. As of yet, though, his fever has stayed right at around 99.9. Please continue to pray for Gray and please pray for us too. It was a very long day today and we’re unsure how many more days this will last. The nurses have told us it will probably last at least a week. We have also been reassured that everything Gray is going through and all the side effects he is experiencing are “normal” and expected for what he has gone through. Although, being told it’s all “normal” doesn’t bring us much comfort. It’s still not “normal” for us. It’s not “normal” for anyone to have to care for their baby with cancer. We will do our best to keep you posted on Gray’s progress and any new side effects over the coming days. Please just continue to pray. Some days it’s all you have.

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7

cream of the crop…literally

Yesterday morning, Gray began his bone marrow transplant. With all the information we were given in preparation for the transplant we still weren’t expecting all that it entailed. To begin, ten people were present for the procedure! Yes TEN!! There were a variety of doctor’s, nurses, students and even an advisor who was critiquing how the doctor ran the treatment. It was intimidating. The bone marrow transplant itself only took about 15 minutes and with set-up probably only a half hour but the entire process was very intense. First of all, the bone marrow they had harvested from Gray months ago was being stored in a large silver drum that the doctor’s wheeled in on a dolly. When they opened the container a sort of dry ice smoke swirled form the top. It was literally something from a movie. We were allowed to hold Gray during the procedure which was nice. The nurses gave him a high dose of benadryl before the procedure to help with nausea and it also made Gray very sleepy. In fact, once the treatment was over Gray was out cold, asleep. In preparation for the transplant all of the nurses in the room set everything up as if Gray would be getting very sick. One of the nurses sat right in front of our chair holding a bucket just in case Gray needed it and they scattered towels across the floor. They even asked that we not allow Gray to hold his favorite blanky because if he should happen to get sick on it they blanket would not be able to be cleaned. The nurse explained that soon after beginning the bone marrow transplant Gray would probably begin coughing and then throw up soon afer. At first, we thought the nurse was going to be right. Just as soon as they began giving Gray his new stem cells he began coughing. We were preparing for the worst. Thankfully and fortunately, though, Gray did not get sick!! The doctor said Gray is a “rock star”!! We were very proud and happy that he didn’t get sick. For the entire day after the transplant Gray was an unpredictable ball of emotions. One moment he would literally be telling jokes or up out of bed dancing and within a split second he would be in a pile on the floor sobbing huge tears and screaming that he “wants to go home”. All we could do was laugh along with him during his good moods and comfort him during the breakdowns. There is no way to explain to a three-year-old what is happening around him or why he can’t go home to his own bed,  hisown toys and his own family. We don’t even understand why this is our situation so how could we possibly make him understand.

There was one seemingly minor side effect of the stem cell transplant that we hadn’t thought too much about but has ended up impacting us more then we could have imagined. You may find it kind of comical when you find out what it is but truly we cannot tell you how badly this simple little side effect is to handle. The doctors had given us fair warning that the chemical used to preserve Gray’s bone marrow until the transplant has an impacting odor. They said that most families describe it as smelling like creamed corn. Well…there’s no way around it…the bone marrow smells EXACTLY like creamed corn. In fact, I don’t think any of us will ever be able to eat creamed corn ever ever again! The hospital room smells like creamed corn, Gray himself smells strongly like creamed corn and any fluids, ANY FLUIDS, that come out of Gray smell even more strongly of creamed corn! At this point, we’re wearing hospital masks to change Gray’s diapers. It’s overwhelming. It makes you sick to your stomach. The constant stench of creamed corn is definitely a side effect we would take over Grayson being sick but it truly is something we couldn’t have imagined! Please continue to pray that Gray will experience as few side effects as possible. We misunderstood the doctors in the beginning. We thought they told us they expected Gray to get sick on day 6 of his chemo treatments but really they were telling us it would probably be day 6 of the transplant. So, we’re still supposedly waiting for the worst of it. We know, though, that Gray is a strong little man and our God is even stronger. We are praying for minimal sickness and a testiment to how great our God is. He is so great that He even cares to keep our little boy from getting sick during his stem cell transplant! Also, just please continue to pray for our family during this month. A full month in the hospital is so overwhelming. We do have alot of help from our family sitting with Gray so that we can run errands, spend time at home and simply sleep but having your entire family life in a total uproar with half of you in the hospital, half at home and no real sense of normalcy it is something you can’t prepare for and don’t ever get used to.

“It is the Lord who goes before you. He will be with you; He will not fail you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

moment to moment

Gray has been in the hospital for his stem cell transplant for five days. The transplant happens in phases. The first week, which is nearly complete, consists of 24-hour chemo treatments. Gray has been receiving chemo now for five straight days. We were shocked to find out that those were his orders. We had no idea that the chemo would be quite that intense. The second phase of the transplant will happen next week and that’s when they actually perform the transfusion. Finally, after the transplant Gray will be in recovery for the final 2 weeks of his admission. As of now, Gray has not been sick at all from his treatment. Praise the Lord! We truly are grateful for that. And even though the doctors have informed us that this is pretty normal and they generally don’t expect children receiving a stem cell transplant to begin showing signs of sickness or other side effects until the seventh day we are still very grateful to have made it nearly an entire week without Gray getting physically sick. The one side effect that has shown itself this week is that Gray has stopped eating. We began to notice signs of his appetite loss early in the week. Even as early as Tuesday evening we saw him refusing food. That night we had even brought him a special treat, his favorite food in the whole world, shredded cheese! He was excited when he saw the package but after just one bite he pushed the bowl away. We weren’t sure why until he said “It doesn’t taste…” Chemo has a tendency to do that. It can change the way you taste and so either foods won’t taste at all or won’t taste the way you remember. Now, several days in Gray isn’t eating anything. The nurses have told us that if Gray doesn’t begin to eat something over the weekend they will have to begin supplementing his diet through his IV. We were told this would probably happen. Tonight, we are simply doing our best to feel settled in our “second home” for the month and care for our little man. The section of the hospital we are in during this treatment is completely cut off from the rest of the hospital. You even have to have a special key pad code to get through the locked doors leading back to our room. There are also tons of new rules surrounding Gray’s stem cell transplant. He is still not aloud to have fresh fruit and now they’ve added pepper to the list of banned foods! Apparently, both could possibly carry live cultures or bacteria that Gray cannot come in contact with. Gray also cannot have tap water. We even have to sponge bathe him, in his bed, with individually packaged pre-soap filled sponges. We have to change his bedding every single day. We also have to brush his teeth every two hours with two different liquids and disposable tooth brushes that are really more  like soft sponges then any toothbrush we’ve ever seen. We don’t really use toothpaste but instead two different liquids that help prevent and treat the mouth sores that we’ve pretty much been told will happen at some point during his transplant. This is definitely a time where you can’t think too far into the future. Our days are broken up into two hour tooth brushing intervals and nurse check-ups. We live diaper change to diaper change and sponge bath to sponge bath. If we allow ourselves to think about the fact that this is our life for the next 30 days it’s enough to make you sad, and mad. We’re locked away in a secluded wing of the hospital with no choice but to press on. It’s overwhelming but somehow, some way it has to be worth it. It just has to be. The hospital rules state that no one under the age of ten can visit a stem cell transplant patient and while we’re sure that they probably make concessions for immediate family members we’re grateful that our oldest son, Seth, is eleven and more then welcome to visit his little brother. Last night he got to come up and see Gray for the first time in a week and they’re reunion was very sweet! They love each other very much! It’s enough to make a mommy’s heart melt!

There’s not too much to do in the hospital but think and lately I’ve thought alot about what a difference a year makes. Sure that phrase can be used to describe overwhelming blessings but it can also be used to describe unimaginable heartache. Never, ever would we have thought our own family would be fighting this fight. As youth pastors, we’ve sat with other families dealing with sickness and loss but it’s just one of those things that you feel immune too. We all feel that way. You never find yourself wondering  if you yourself or, even worse, one of your children will be diagnosed with something as tragic as cancer. Stage 4 cancer. For whatever reason, though, we have been asked to walk this road and we’re doing our best to put one foot in front of the other day after day. We would be lying if we said that we are strong all the time or feel blessed to walk this road as a family…it’s simply not true. Sure, there are days when our faith is strong and we can see the sun peeking through the clouds but honestly there are days when the rain is falling, the flood waters are rising and we’re not sure if we’ll sink or swim. Whatever our emotions or physical state, though, we cling to our family and we cling to your prayers. Thank you for standing with us and thank you for your constant love and support. We ask today that you pray for the upcoming week. The doctors have told us that Gray’s true symptoms from the stem cell transplant will probably begin to kick in on or around Monday and we want to be prepared. Of course, we’re praying for minimal side effects but we also want to pray for strength and wisdom as we care for Gray and simply as we deal  with the day to day of cancer and all the violent sickness that comes along with it. We also ask for prayer for our oldest son Seth. He is approaching the end of his 5th grade year in school and has several projects to complete. With one of us constantly in the hospital with Gray we just want to be sure that “there’s enough of us to go around” so to speak. It’s a balancing act to say the least. This week we did receive some very good news! The bone marrow biopsy that they performed on Monday came back with wonderful results! Gray’s bone marrow is still testing negative for any cancer! That news was our bright spot this week! It’s a great reminder that God is good and, yes, He has a plan! Thank you for your continued prayers!

To end this post on a positive note, in the first picture we posted Gray is actually up out of bed walking his IV machine around and around doing his best to make his bed!! Yes, you heard me right, he’s making his bed!! I guess if your three-year-old son who is battling cancer and 24-hour chemo treatments has the strength to get up and make his bed the rest of us have no excuse whatsoever! Ha!

“But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.” Isaiah 53: 5

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