First with the Exciting News!!
SO, Elijah will be officially adopted by the UAB Men's Basketball Team this Saturday! We are super excited about this!!!! So thankful to the Friends of Jaclyn Organization (FOJ) and the UAB Men's Basketball team for making this happen for our sweet boy!
Rewind a year and few months:
We had attended an FOJ adoption of one of our dear sweet friends from Children's and at that event is where we were introduced to the FOJ. Months later - Elijah attended his first college sporting event ever on January 8th, 2011 when UAB beat UTEP in triple overtime 100-97! We just so happened to be sitting next to the student section and it didn't take Elijah long to realize that it was "ok" to take his shirt off and wave it violently around his head while screaming at the top of his lungs (and he did just that). We couldn't have been more excited to see our son so happy and that the Blazers pulled it off! Elijah suffers from a condition known as postoperative cerebellar mutism syndrome (caused by tumor damage and the evasive surgery to remove the tumor) that has affected his ability to show emotion so to see him having so much fun was huge for us. When the FOJ contacted us about a possible adoption for Elijah we knew immediately which team to hope for. UAB was then undergoing a coaching change but we were hopefully optimistic that all would work out. We got the phone call a few months ago and we met with the coaching staff and players soon after. They have all been absolutely amazing to us and Elijah has made it to every home game this season! We all enjoy watching Elijah's "Basketball Buddies" do work on the court. Again, we can't thank FOJ and the UAB Men's Basketball team enough for the joy that they have brought into our lives. GO BLAZERS!
FOJ's website: http://www.friendsofjaclyn.org/
UAB Men's Basketball website: http://www.uabsports.com/sports/m-baskbl/albr-m-baskbl-body.html
Now for the not so good news:
Elijah's little sister, Dimitra, has been undergoing testing for Autism now for over 3 months. We finally had the "parent meeting" with the specialists this morning and Dimitra was diagnosed today with autism. It's hard for us to comprehend being the parents of 2 special needs children. As with Elijah's diagnosis - there was the initial feeling of anger but soon after relief. Relief because we now have a name for this situation and we can now formulate a plan to combat it. We only want whats best for our babies and as parents, we are upset. We worry about what the future holds for both of them and if we will be able to adequately prepare them for when we are no longer here. We can only do the best that we can with what we have and trust Almighty God for rest.
Please continue to keep us in your thoughts and prayers and thanks so much for keeping up with us! We love you all and GO BLAZERS!
All is well here!!! I do apologize for our tardiness and in advance for the length of this post. I also apologize for grammatical errors and if I ramble as it is a bit late.
We are all doing well - Elijah is doing GREAT and his little sister, Dimitra, is too. A few things to update on, as it's been awhile, so I will do my best. This post pretty much marks one year since we started this blog and I want to thank those of you who have followed along!
December 16th the kids and I were on the way home from speech therapy, at Children's Hospital, and we were involved in a wild car crash. We were rear-ended and our only car was totaled. We were preparing for our semestrial drive out to California to visit with Vasiliki's family, the following week, and this trip we couldn't postpone because Elijah's Thio (Uncle in Greek), Pete, was getting married! The insurance company got right to work and set us up with a brand new rental van! This was a huge step up from the mighty silver bullet - our trusty toyota corolla that had gotten us back and forth for the past 4 years and we were very appreciative! We all got checked out at the Hospital after the wreck. I had a concussion but CT scan showed no bleeding or swelling. My main concern was the kids and they checked out fine so we were ready for the trip!
We had spent a few days in the ER prior to the wreck because Elijah had been falling A LOT. We think its because he is getting more confident with his age and doesn't like to use his walker as much. Elijah's Oncologist wrote for him a new helmet and we were set for the trip! (Elijah still can't walk unassisted and he still doesn't laugh or cry. These are all things that we are praying will come back).
Christmas was a success! Opened presents and made a birthday cake for Jesus (we know that Dec. 25th isn't really Jesus' birthday but it sure beats some of the pagan rituals that some continue to do on this day).
Left for California on the 27th and it was a wonderful drive out in a nice new BIG van. The scenery was AMAZING as always. The sun rises and sunsets were incredible and its hard to beat a snow covered New Mexican Desert. Couldn't have asked for a better trip out. The kids did great and we arrived on the 29th. We were all so excited to see the family, friends and to be back in California.
Vasiliki let me spend New Years Eve with my favorite band on the planet, the Tedeschi Trucks Band, at my favorite venue on the planet, the Warfield! The history in the Warfield is so thick and sharing New Years with the Tedeschi Trucks band there was unforgettable. The band, as always, treated me as one of their own. Such a great group and so good to see them all again.
It was such a great show and it was so good catching up with my good friend Oteil Burbridge. Eating dinner with him and his brother Kofi, backstage, is something that I will never forget. It's always good to see Oteil and It's amazing how rejuvenating it is to see old friends after a long time apart. It had been 6 months since the last time that I had seen him and ironically at that exact same venue. What's the chances of seeing a friend 23oo miles from home, completely unplanned, twice in the same year? On a side note, please keep his awesome wife, Jess, in your prayers as she is in Rwanda right now as a Field Communications Officer for the Dian Fossey Gorilla Fund International. You can keep up with her amazing journey on her blog @ http://www.jshousephotojournalism.blogspot.com/. Jess and Oteil were very instrumental to our family during Elijah's time in the hospital and we love and appreciate them very much. Jess makes the best chicken pot pie that I have ever put in my mouth by the way! True story!!! Good friends really are hard to find but well worth what ever it takes to keep them!
Spent a few days visiting our favorite spots in Monterey, Pacific Grove and Big Sur. We did a lot of driving! Visited Muir Woods again. This was the first time that we had been to Muir Woods since Elijah's diagnosis. He was just a baby the last time we had been there and it was so neat to go back with him almost 4 years later. The Trees are still Huge. Muir Woods is like Disney to me. It's one of those few places that doesn't get smaller as I get older.
We cut Elijah's hair for the wedding so now he looks like a little man! (you will see in the pictures below)
The wedding rehearsal, dinners, wedding and reception were absolutely beautiful!!! Elijah was a ring bearer and Dimitra was a flower girl. They did so good for their first time in a wedding. We are super excited for Pete and Helene and wish them a life of health and happiness!
We made it back home safely on the 8th (I think) and we have been house hunting ever since. Please pray that we can find a house soon. It's hard to go from having a home to not. OH and that van ... it made such an impression on us that Enterprise sold us one just like it!! We are the proud owners of a 2011 dodge grand caravan! The super cool thing about that is, believe it or not, its 10 dollars cheaper a month than what we were paying on the corolla! YEAH!!!!
Dimitra turned 3 on the 23rd of January so that was super fun and Elijah will be turning 5 on February 25th! I get very emotional just thinking about it all but I'm just gonna say that birthdays are huge around here and we don't take them for granted!
I got word, on the way back home from the trip, that a childhood friend of mine had passed away from her battle with cancer. She was an amazing soul and will be deeply missed by many.
We have read of good and bad news from our Children's Hospital family over the last few weeks. This kind of life isn't something that anyone asks for but we consider ourselves family with those that have been affected by cancer. We love and pray for the families that we have met through this journey but we really despise the circumstances around it. Please keep these families, and ours, in your prayers. Please keep all who have been affected by cancer in your prayers.
Thank you so very much for keeping up with us and most of all for your prayers for our son!!!
Just as the last time out, I leave you with a few pictures from the trip.
God Bless You,
gary, Vasiliki, Elijah and Dimitra
So Elijah's MRI came back all clear with no evidence of disease!! Both brain and spine looked good and all blood work came back good as well!! :o) We are super excited about that and we pray that Elijah continues to do well. Thank you all so very much for your prayers and please keep all who have, and continue to be, affected by cancer in your prayers. Tomorrow is the last day of Pediatric Cancer Awareness month but this fight continues on for us. We have lost some dear friends to this disease, we have dear friends fighting cancer right now and there is a horrifying possibility that Elijah could relapse. Please join us in this fight by joining our CureSearch walk Team or donating to the General Team Fund. CureSearch is the world's largest Pediatric Cancer Research organization and we know they put the money to good use because Elijah is currently enrolled in a CureSearch study. Every day 36 children are diagnosed with cancer and 7 will die. That's 2 classrooms worth of children per day diagnosed with cancer! With your help we can beat this disease. Please join us in this fight and recruit your friends and family to do the same. You can join our team or create your own. Also look for upcoming CureSearch walks in your area. Go to Curesearchwalk.org and enter your zip code or you can locate ours here:
Thank you again, from the bottom of our hearts, for following along and most of all for your prayers! Here is a picture of Elijah before the MRI yesterday.
So, we got word yesterday that Elijah will have an oncology clinic visit and blood work September 7th and an MRI (Brain and Spine) September 28th. Please keep him in your prayers on those dates.
Had a great night last night, as a whole family, @ Turner Field watching the Giants vs. the Braves. We had great seats and were surrounded by great people. We were disappointed in the final score but all in all it was a great night at the Park. Elijah got his picture with San Francisco Giants outfielder, and Home Run extraordinaire, CODY ROSS and we were truly honored when the President of the World Umpires Association, Umpire JOE WEST, presented Elijah with a game played ball. Elijah hugged his neck and we gave Mr. West a prayer bracelet which he immediately put on and wore the remainder of the game. We were so excited! I sure hope that we can one day meet Mr. West again, get him to sign that ball for Elijah and get a picture. So many people crowded around that we couldn't get a clear picture with Mr. West and we were too excited to even think to ask him to sign that ball. Hopefully, one day, our paths will cross again.
Thank you all so much for following along and please keep Elijah , and all who have been affected by cancer, in your prayers.
Cody Ross, Elijah and Vasiliki
Umpire Joe West wearing a pray for Elijah bracelet.
Its been a while and I do apologize in advance for the length of this post!
So much has gone on since our last post and I will try to get it all in here! We drove out to California, May / June, for 3 weeks for a much needed visit with friends and family. We had such a great time catching up with everyone. We attended the Greek festival at St. Nicholas. This is the church where Vasiliki and Elijah were baptized. We met with Thio Pete's bride to be and her parents. They are a wonderful family with immense hospitality and great cooking skills. We are so very proud for Pete and Helene and we can't wait for the wedding in January!
Pete and I were able to get away for a few hours and enjoy my favorite band, The Tedeschi Trucks Band, at the Warfield.. What an amazing show that was! Thanks so much to my friends Oteil and Jess for the tickets & allowing me backstage. What an amazing venue with so much history!
We were blessed, by Thio Pete, with tickets to a Giants Game and Papou arranged for the names of Elijah and Dimitra to be on the jumbo screen!
I have never seen either of my children so happy as I did during this trip. It was a reviving experience for the whole family! Elijah and Dimitra spent time helping Papou in the garden and snuggling with Yia Yia and we all spent time in a few of our favorite spots... Monterey / Pacific Grove / Big Sur.
Our hearts were warmed and we were honored for Elijah to meet a group of Marines at San Carlos beach. He hugged their necks as we thanked them for their service. We have an unconditional love, respect and admiration for our men and women in uniform and could never thank them enough for their service.
On the way home we met with some good friends at Ruby's diner on Huntington Beach Pier which was a heap of fun. We also were blessed by friends with a trip to Disneyland!
There aren't words to sufficiently describe how the Disney trip positively affected our whole family. I have never seen either one of my children so excited. They were both mesmerized with the whole place but Elijah was most of all with Minnie! Both Elijah and Dimitra met with just about every character that they wanted to except for Donald Duck. We searched high and low for Mr. Duck. When it was time to leave... Elijah was visibly upset. He can't cry (or laugh) due to post operative cerebellar mutism but everyone around knew that he wasn't happy. A very nice employee came up and wanted to know how he could help. When we told him that Elijah wanted to see Donald he told us that Donald had left for the day. BOY was Elijah mad!!! The employee said: " He really does like Donald doesn't he? They even have the same temper." It was funny but Elijah didn't think so.
The trip home was good but we sure hated to leave. Seeing the Milky Way in the middle of the desert was an amazing experience. As many times as we have made that trip We had never seen it until then.
We stopped off in Dallas to visit with more friends and family and we had a wonderful time with them as well. We made it home safe on a Sunday and Elijah and Dimitra started back with therapy that next Monday... Dimitra with speech therapy and Elijah picked back up with speech, occupational and physical.
Elijah was enrolled, for most of July, in an intensive therapy program, 3 days a week, to focus on walking. His strength and balance are improving despite the fact that he only has half of a cerebellum. He has made huge strides with his walking and we do pray that he will one day be able to walk unassisted.
In July we received word that my sister and 6 month old nephew were being flown from El Puerto de Santa María, Spain to Walter Reed in Maryland. My nephew, Ryan, has had respiratory problems for a while now and the Drs in Spain decided that it was time to send him state side. My mom and I, along with the baby monkeys, drove up for the weekend to visit with my Sister and Ryan. (Vasiliki couldn't get off from work on such short notice.) We had a good time visiting despite the circumstances.
Ryan was diagnosed with bronchomalacia and he will be on breathing treatments until he grows out of it. Please keep him in your prayers.
It really meant a lot to see my sister and Ryan and I can't wait for their whole family to get back stateside. Please keep the men and women in uniform and their families, at home and abroad, in your prayers. They do sacrifice a lot and work very hard to keep us free. If we could just get Congress to consider this country's best interest we would all be doing alright!
It also meant a lot to me for Elijah and Dimitra to see our Nation's Capitol and we saw a lot in 2 days!! We pretty much (briefly) saw and ran through everything on the D.C. side of the Potomac. We even saw the Presidential motorcade, Sunday morning, as the President was leaving St. John's Episcopal Church in Lafayette Square.
This was my second trip up there but it had been 20 years since my last visit. Most places, that one visits as an adult, seem smaller than when visited as a child - but not D.C. That place is amazing. I do hope to go back so Vasiliki can see it and so the kids can see more!
Needless to say we have been very busy the past few months!
The Curesearch walk is fast approaching and it isn't too late to sign up or donate.
Thank you, so very much, for praying for Elijah and following along with his journey!!! Please keep all who have been affected by cancer in your prayers.
I leave you, for now, with a few pictures from the past few months. Thanks again for following Elijah's journey.
Things are going well here and Elijah is growing like its nobody's business. We want to let you all know about the CureSearch Walk for Birmingham scheduled for October 22nd at UAB’s Campus Green! The website is finally up and running and we would like for you to check it out at:
There you can read up on the event information, donate to, and or join, Elijah’s team by clicking on his name in blue. You can also create your own team if you like. The neat part about this website is when you join a team or register individually; you don’t have to come to the event to make an impact. You can sign up as a “virtual walker.” For those of you that would like to physically participate in the walk you can sign up as an adult walker or child walker. No matter what you choose, all will have their very own profiles so people can donate through you. If you have any questions please feel free to email me at email@example.com
Thanks so very much for all the prayers and please keep all who have been affected by cancer in your prayers.
Elijah has a follow up tomorrow morning (clinic and lab work) and an MRI Thursday morning. Please keep him in your prayers concerning that.
We also are very excited about the Curesearch walk coming up in October @ UAB. We are working very hard on getting this together and will keep yall posted. We have a group on facebook called " The CureSearch Advocacy Group of Birmingham Alabama" if any one is interested in helping out.
As a group, we are putting together a walk to raise money and awareness for CureSearch. CureSearch actually provided some of the treatment protocols for Elijah's treatments as they do countless other children all over the world.
Our group statement gives some insight so here it is:
The CureSearch Advocacy Group of Birmingham Alabama is a group made up of families and friends who are passionate about providing a stronger voice and equal access to research funding for childhood cancer. Together, this group will advocate for CureSearch through events held in the Birmingham area. We feel that research, facilitated by CureSearch through the COG, is our best hope in combating childhood cancer.
Cancer is the number one killer of children by disease. On average 46 children are diagnosed with Cancer every day in the US. This year approximately 3,000 children, one every 4 hours, will die from cancer.
CureSearch raises private funds for the Children's Oncology Group, (COG) the world's largest childhood cancer research organization. 90% of all money raised by CureSearch goes directly to the COG. The remaining 10% is used for operations of CureSearch.
The Children's Oncology Group is an international network of more than 5,000 physicians, nurses, and scientists whose collaboration, research and care have turned childhood cancer from a virtually incurable disease to one with an overall 78% cure rate. Our hospital, Children’s Hospital in Birmingham Alabama, is part of this collaborative effort and is 1 of only 2 COG hospitals in the state.
On behalf of all of those that we have already lost to this horrible disease, those 40,000 kids that are fighting for their lives in every oncology center all over the US right now, on behalf of those who are in remission but haunted with the frailty of their future and the 46 kids that will be diagnosed today, please join us in this fight. Together we will make a difference!
Here is a link to CureSearch’s website: http://curesearch.org/
Thank you all so very much for stopping by and the prayers. Please keep all who have been affected by cancer in your prayers.
Thank so much and God Bless!
Gary (Elijah's dad)
Elijah’s EEG results are in and it reports that he didn’t have a seizure during the test. The results also show that the frequencies of his brain waves are normal which is a very good thing!
So, I guess if there is a next time, we will have to document and possibly video record so we can show the Drs what we are seeing.
Elijah’s port removal surgery has been rescheduled for March 3rd to give him time to get over this cold that is ailing him.
If you haven’t already, please mark down in your calendars March 16-17, 2011 for the
Children's Cancer Awareness and Advocacy Day in Washington D.C..
This is an AWESOME opportunity, for those that are able to attend, to visit and speak directly with Congressional members. Each advocate, on average, will have 3 to 5 Congressional meetings. I can’t begin to express how HUGE and important this is and I am sick to my stomach that we can’t afford to go this year.
If you are like us and unfortunately unable to attend please pray for those that will be there. Please pray that they will have the right words to say and that those words will not fall on deaf ears. Pray that this will be the year that our federal government finally takes a stand for our Children!
For more info concerning this event you can check it out at: http://www.curesearch.org/support_curesearch/raise_awareness/index.aspx?id=8398
Please keep all who have been affected by cancer in your prayers.
Elijah will be 4 YEARS OLD on the 25th of this month!!!!!! (and he thinks he is ready for his own motorcycle.)
The date for Elijah’s port removal is Feb. 10th so please say a prayer for him concerning that. It’s bitter sweet to see that device go but I am excited about this next step and I pray that he will never need one again! This will be surgery # 15 for Elijah and I hope that it is the last!!!
We briefly spoke with Elijah’s Neuro-Oncologist and Nurse practitioner today about some concerns we are having and they both agreed that Elijah needs to come in this friday for an EEG so please keep him in your prayers concerning that as well. It’s been very scary a few times for us and we hope and pray that this all gets sorted out as soon as possible. I don’t want Elijah on medicine unless we know for sure what’s going on so hopefully the test will give us some answers.
Please keep those in your prayers that have lost loved ones to cancer and those that are fighting right now. Please pray for those that are in remission and those that will be diagnosed this week.
Please keep the Drs, nurses, therapists, chaplains, c.a.’s, child life specialists, social workers, and all the care providers in your prayers. It can't be easy doing what they do every day and they need our prayers as well.
May God Bless and Keep each of you!
We had an awesome time this morning watching the Ringling Bros. Elephants walking from the train station to the BJCC. One of Elijah's nurses from Children's Hospital joined us which made it extra special. It really made Elijah's day to see the Elephants so close and it made our day to see him so excited.
Elijah waiting patiently for the Elephants
Vasiliki, Elijah, Nurse Jenna and Dimitra