Wow! Almost an entire year has passed since my last update! There were sooo many times I wanted to post an update and failed to do so. I was truly hoping I would do better, and I again thank everyone who has let me know that they were on his site during this past year to check on Elijah’s progress. I will do my best to sum things up?
Elijah is doing so well. We definitely had a busy summer seeing various specialists to look into and manage some of the side effects from his treatment. Dental work, dental work and more dental work. Elijah has been such a trooper! In fact this summer he lost his first tooth. He would not leave it under his pillow for the tooth fairy as he was most unwilling to part with his tooth-even with the knowledge that a surprise was a sure thing. (He still found a surprise under his pillow the next morning?) He carried his tooth around with him for over two weeks in his tiny treasure chest made just for this very purpose until I convinced him that mommy would keep his treasure safe. Anyone who knows our son, knows I speak the truth.
He is now also under the care of Children’s Hospital of Pittsburgh Dermatology. Dr. Kress will monitor Elijah’s moles on a yearly basis. He checked Elijah and reviewed the biopsy from the ones already removed and said that the changes in Elijah’s skin were common in individuals having gone through the treatment he received, which we knew from Dr. Grupp. We will continue to keep an eye on things.
In my last update, I talked about Elijah’s low level of strength and stamina. We were hoping this would resolve as his energy level picked up and he became involved in more activities, but it has not. In fact, Elijah really becomes extremely discouraged and frustrated with himself because he cannot keep up with his cousins and friends. He becomes so winded and flushed. I witnessed this first hand at a recent school function, and it was difficult for me to watch how upset he became as he literally collapsed to the gym floor, shoulders slumped, from being so fatigued and discouraged. He tries so hard, and we continue to encourage him. We will definitely discuss beginning physical therapy when we go for Elijah’s appointment with Dr. Grupp in January. We would also appreciate your prayers for Elijah in this area as this has become a significant challenge for him.
Elijah has been blessed to spend another year with Mrs. Spory (the best kindergarten teacher ever!!!). She continues to be a tremendous help and support to our little guy. What a blessing as he LOVES learning! Alfred and I were able to take Elijah’s pet Org, a red-bearded dragon, in for pet day. We got such a big kick watching Elijah present his pet to his classmates and proudly (and knowledgably) answer questions.
Elijah received the Kindness Award at school for the second year. He is truly one of the most loving little guys you will ever meet! And he loves life. Oh the things that come out of his mouth! Just this week he pulled my dad aside and remarked, “Ya know Pap, nobody gets to live the life I do.” He is always asking me if I think he will be a great dad. He talks about what he wants to do for his daughter and what he would like to teach his son. He told me that he wants to have as many children as Aunt Erin and Uncle Craig-6! He talks about the vacations he will take them on and the special things he will do for his family. He even talks about saving his money for a house instead of spending it. He saves what money he has on hand in his Velcro dinosaur wallet ? All of this from a six year old little boy! It is such a joy to watch him grow up!
It was so good to see Zach, Melissa, Kolton and Caidence at our mini family reunion on the hottest day of this past summer? Kolton looks sooooo wonderful! And for those of you who have heard me talk about Elijah’s buddy, Alyssa, she is doing wonderfully as well! I so enjoy my phone conversations with Dana. We continue to keep in touch and try to connect when we are at CHOP.
Time goes so quickly! We are fast approaching Elijah’s 4 year check-up with Dr. Grupp. We expect a good report! Alfred and I look back over ALL the Lord has done in each of our lives, not just the physical miracle in Elijah but the healing in our hearts, ministering to Abby and restoring stability in our home. We are so grateful for His many blessings!
We will definitely update once we get home from our trip to CHOP for Elijah’s appointments and testing. We pray everyone enjoys a blessed Christmas! Thank you for continuing to keep us in your prayers, and don’t forget to check out the new pictures we posted.
January 8th, 2009
Happy New Year, everyone! I hope everyone enjoyed as wonderful of a Christmas holiday as our family did.
Wow! I cannot believe it has been over six months since I last updated! Dr. Grupp told us that as Elijah got better and life returned to "normal" that the updates would become further and further apart. He was right.
Well, to bring everyone up to speed since Elijah's last appointment with Dr. Grupp in June... We did meet with the Endocronologist at CHOP on October 1st. The lab results did indicate primary thyroid insufficiency so Elijah is now taking Synthroid daily. I cannot begin to tell you the difference in his energy level!!! He no longer needs to take naps, nor does he fall asleep before his head hits the pillow at night:) I bellieve in time his muscle mass will begin to improve as well.
We are hoping that the increase in his energy will allow him to do activities that will strengthen his muscles. So for now, we are putting off the physical therapy.
We also visited Dr. Grupp again on December 9th. All his labs came back fine. We are sooooo grateful for what the Lord has done in his life! What a testimony we have!
Elijah has an appointment on January 16th to see the doctor who will be removing a not so good looking mole on the left side of Elijah's chest. Elijah is the second patient, out of 150 of Dr. Grupp's patients, who needs to have this done. His cousin Kolton was the first. So crazy that a disease that affects 600 children a year occurred twice in one family within a two year period. Then both cousins needing to have the same rare side effect addressed. I'm sure the pathology report will come back fine. But if it would be malignant, then it will be safely removed before anything can spread. The Lord has brought Elijah through too much for something like this to set him back.
Provided all of that goes well, we will not need to see Dr. Grupp or the endocronologist until June.
Enough of all that. I am so happy to share that Alyssa is FINALLY starting to do better. Even after she got her kidney she went through many more very touch and go moments, but things are finally stabilizing and looking up!
By the way, Elijah loves, loves, loves Kindergarden!!! He truly has the VERY BEST teacher! His excitement for school and learning is amazing to see! I have so many stories I could share.
My mom and I took Elijah and his cousins, Samuel and Shiloh, to Carnegie Museum of Natural History, and all three said, "This is the best day my life!" I will try to post some new pics soon.
One day my dad and Elijah were working on something together. Elijah turned to my dad, pointed his finger and said, "I know what your thinking, Tap. Your thinking your just a little bit smarter than I am." How funny is that! I could just see Elijah hearing Mrs. Spory saying that to one of his classmates and thinking "That's a good one. I'm going to use that line too."
This Christmas, our family was blessed to be a part of Light Up Night at Ronald McDonald House--Elijah's favorite place. I was the keynote speaker and was given the opportunity to, in small part, share the ways RMH has impacted our family throughout Elijah's treatment. And Elijah was Mastor of Ceremony so to speak. He helped McDonald push the button to turn the House lights on! He was soooo proud!
Elijah is now 3 years post-diagnosis! As I look back, I stand in amazement for all that the Lord has brought him as well as our family through! He has done great things, and I bless His holy name!
I will try to do better about updating. Everytime I share this I know I sound rediculous, but this process of even updating is still very emotional for me. I am doing so much better emotionally, but there are still memories of moments and of things Elijah had to go through that I still have to work through. And when I update it pulls on those strings--even though a good bit of time has passed. The Lord is my peace, my comforter and my joy. There are things we deal with that only He can minister to and bring us through. I am truly learning that grief is a process, and we all work through it differently. I'm not talking about not letting go of the past or feeding my pain. I am being very real and transparent sharing these things. I'm sure there are those of you who can relate. My children and my family are my heart, and we went through way more than I have ever been able to share on this site. But I praise God that I serve a Heavenly Father who will make our pain count for something so that lives and be touched, and He can get the glory.
This site is very special to me. It is our son's journey, our history book and testimony.
I again want to thank everyone who takes the time to check up on our little guy. I also ask that you continue to keep our family in your prayers because I fully believe we serve a prayer answering God.
June 21st, 2008
We are so very thankful to report that Elijah’s MIBG scan was clean!!!!! This was his 2 year post-transplant scan. We give all the glory and honor to the Lord! We will see Dr. Grupp in six months for another check up, and if everything goes well his next scan will be in one year.
We will be going to CHOP again on October 1st to see an endocrinologist. Dr. Grupp checked Elijah’s thyroid, and the results showed that his thyroid is working too hard to produce normal levels. He will be put on medication to resolve this. We are hoping this will help Elijah to feel better. He complains of being tired and not having enough energy quite a bit. While he has become so much stronger and healthier, I must admit it tugs at my heart to see him drop his head and hunch his shoulders with discouragement because he is not able to keep up with his cousins and friends.
It has been a rather long time since I have updated, and I am disappointed that I did not make myself share all of the adorable things our son has done over the past several months. And even though I enjoy updating, sometimes it is still just too painful for me to do so. That probably does not make sense, but it is where I am at none-the-less. I must admit, and I am embarrassed to do so, that I am still struggling with the many memories and thoughts that still pop into my head. I am not trying to hold onto them, yet I refuse to forget how very bravely and with such grace our little guy went through his treatment. I know I will never fully comprehend ALL the Lord has done for him and our family. Elijah is so aware that the Lord has healed him and is making him stronger.
I feel guilty that I still carry around a type of grief because we are a miracle, a success story. And even though Elijah deals with side effects from all of the treatment, they are not life threatening—which is an even greater testimony of what the Lord has done in his life. I just hurt sooooo incredibly deeply for the parents and families who have gone through all that diagnosis and treatment entail and still lose their precious child. It is almost unbearable for me. It is just so difficult to go to CHOP and see the children and their families in the onco clinic knowing, to a great degree, what they are going through. I am just so thankful to have Jesus as my personal Lord and Savior. I could not have gone through this without him. He is such a gentleman, a most loving heavenly father. He does not push us to get over our grief and pain, but ministers to us in a very personal way until we come through it realizing that we have come to know him on a much higher level with our faith and strength increased in him.
We were so fortunate to see so many of the very special individuals who have become a part of our lives at CHOP. They were so excited to see how well Elijah is doing! For some, it was the first time to see him with hairJ What special people to still remember our little guy after two years!!!
We were also able to have lunch with Alyssa and Dana! Elijah and Alyssa enjoyed seeing each other so much! Even though Alyssa is still so very sick, this is the best we have seen her look in two years! We just found out that she is getting her pager from the kidney transplant list on July 14th. The doctor has to be extra particular in the kidney chosen because of all the physical issues she is dealing with. It will take anywhere from 1-30 days for Alyssa to get a kidney. I am asking everyone to pray for a complete, quick and strong recovery for her. Please pray against infection and sickness of any kind as this is an incredible risk and threat to her. We believe for a fresh, new healthy start for Alyssa.
Since I have last updated, Elijah graduated from preschoolJ He had the best school year. He loved his teachers Mrs. Tustin and Miss Lucy! Even though he has been out of school for a month and a half he is still insisting that he will be marrying his preschool sweetheart, Paige.
Elijah also played on a T-ball team with his buddy Cole. His team’s name was the Bears—the bad news bearsJ He definitely had some good hits without the use of the tee. He ran with such determination to each base. During one game he was so impressed with his hit that as soon as he got to first base he gave me a double thumbs up, and when he passed home he called to Alfred and said, “I did that for you, daddy!” --talk about priceless.
We definitely were so blessed to celebrate Elijah’s 5th birthday! He wanted to have a cowboy party--so a cowboy we had. Of course dinosaurs had to be involved in some way as well. My Aunt Karen hid a dinosaur egg in the yard for him to find, and it was priceless to see the wonder in his surprised face when he found a “real” dinosaur egg in his own yard! (In the past he has unearthed “dinosaur lungs” during his excavations). He had a blast going around the yard “scarring” everyone with the dinosaur costume my mom got him—equipped with sound effectsJ He said it was “the best ‘birfday’ ever!”
Elijah has also enjoyed sleeping over at Aunt Erin and Uncle Craig’s house. He loves playing with his cousins. We always get a few chuckles when he comes home because he picks up new habits while he is away. For example, even without knowing that he had stayed overnight there one would immediately know once they saw our son walking around the house in his undies only or when they saw him go outside to pee in the bushes—both definite Craig Eagleson, or I should say, Eagleson boys’ trademarks. I love my family!
I want to thank everyone who continues to check Elijah’s site and pray for our family. We still need your prayers. We also want to thank Mike and Sean for their continued help in keeping Elijah’s site. They don’t know how much it means to us. Also, please don’t forget to check out the new pictures we have posted.
January 19th, 2008
HAPPY NEW YEARS!!! We enjoyed a most wonderful holiday!!!! We were able to visit with friends and family in a way we have not been able to for the past couple of years. Elijah literally squealed with joy as we decorated our tree! His excitement was truly pricelessJ To him, our Christmas tree was the most beautiful one in the whole world!
Elijah even did some Christmas shopping of his own this year. Our favorite: he gave Abby a blue dolphin car air freshener—he believed he was giving her the greatest gift in the world. I mean come on; it was blue and an animal. You have to know Elijah to understand that to him what gift could be better? Since he was having a difficult time parting with it, Abby said they could share it. It is now hanging off of the ceiling fan in her roomJ
I can’t tell you how many Christmas “craps” (crafts) he made! Even now he is still asking to make more. One of his favorite times was when him and Abby decorated gingerbread men. Sometimes, Alfred and I laugh because we feel like we are stuck in that one Disney Christmas video with Donald Duck’s nephews—the one when it is Christmas Day over and over and over again. Every time it snows Elijah is convinced its Christmas again!
Considering that Elijah was on an antibiotic first for strep (sp?) throat and the second for a sinus infection, I believe this was his best Christmas yet. His strength is so much better now, and he is finally starting to gain weight!!!
We go back in June for his next six month check-up. We are hoping to be able to take him to the zoo this time.
I am happy to share that Alyssa has been out of the hospital for almost two months now, and she is scheduled to get her kidney transplant come this spring. I believe Dana said in May. Please continue to pray for Alyssa and Dana’s health as she will be the donor.
Thank you for continuing to check on Elijah and send us e-mails! We have FINALLY posted new pictures; so please take a look at how well Elijah is doing!
