October 29th, 2006
Wow! It has been a month since I last updated! Elijah is doing extremely well! His hair is still growing in slowly:) I am still trying to get use to it being so much darker! I wonder if it will come in light again down the road. Elijah had three of his eight cavities fixed this week. He did better than any of us thought. He sat still--even when he was crying:( I hope his permanent teeth were not affected by his treatment. He was so adorable in the waiting room! He was showing everyone his shoes and how fast they make him run. He loved watching the fish in the salt water tank! He was a perfect angel. He even put away the toys he played with without me asking. One of the ladies commented that I must have him well-trained, and I was thinking, "Boy I wish he did this at home:)!"
He is still always hungry, but doesn't really eat too much of anything. I am constantly getting something for him to snack on. Hopefully when we go for his checkup he will still have held onto the 1 pound he gained since last visit.
He has been very cranky this past week. I forget where we were going this past week, but when I was putting Elijah into his carseat he saw a Christmas toy in a bag that I hadn't taken in the house. I wouldn't give it to him, and with a red face, big crocodile tears, and chest heaving he said, "Mommy, 'or' not my best friend anymores!!!" We were both heartbroken:)
He has woken up in the middle of the night crying, and at times has been restless in his sleep. Both Alfred and I were thinking the same thing: this is how he acted about 11/2 months before he was diagnosed. I hate these thoughts, but I know it is natural to think such things after going through having your child diagnosed with cancer. But I continue to take my fears to the Lord, and praise him for ALL he has and continues to do in our family. This past month has been a bit tough on me. The psychologist called me last week just to check up on how we are doing. I am glad she did because I told her that I didn't know why I was feeling the way I was, and she said that she was just talking to a colleague and discussing that the time after treatment tends to be the most difficult for parents. We are working through it :). We thank the Lord that we are not alone. He continues to be our peace, strength and comfort.
We go to CHOP on Nov. 8th and 9th for bloodwork and his second scan. We expect a good report!!!
PLEASE continue to keep Alyssa and her family in your prayers. Since I last updated they have spent most of this last month at CHOP. Her kidneys were only functioning at 20%. Her lungs and stomach filled with blood and she was on a respirater to keep her alive. They did not think she would live through the week. The Lord miraculously touched her! She got dialysis, lots of blood products, and they were able to remove her breathing tube two weeks earlier than they thought. She was supposed to go home , but they put another line in for dialysis. It would stop bleeding so they kept her on the oncology unit over this past weekend. On Monday things started all over again. Alyssa was lethargic, and started to breath at 100 breaths per minute. The normal for her age is 30. They put another breathing tube in, and did a chest x-ray. Her lungs were full of blood again. Dana and Carlo are emotionally and physically exhausted. This has so hard for them to see Alyssa going through this. The doctors do not know why her lungs keep bleeding. Please pray the Lord gives the doctors wisdom to treat her correctly. Please pray the Lord continues to keep Alyssa strong. Please pray for Dana and Carlo to have extra strength and peace. And please pray for Alyssa's healing. I know they appreciate your prayers.
November 13th, 2006
Day +155!!! Once again I must apologize for taking soooo long to update. My cousin Zach (through his wonderful mom Carol) reminded me of how negligent I was being in keeping those who care informed:) I always love talking to her. She is just a very, very special woman. She also encourages me by letting me know that Melissa (her daughter in law) and Zach have gone through many of the same feelings that Alfred and I are currently working through. Their son Kolton will be going for his scan on Nov. 29th. We are believing for another good report! He is such an adorable character! I continue to enjoy e-mailing with Mellissa, and I can't wait till we can get together! I just hope we don't have to wait for a family reunion!
Elijah's second scan was CLEAN!!! We praise the Lord for this incredible miracle! It is the best Christmas gift in the world! As I mentioned last time, Alfred and I were more nervous this time because some of Elijah's behavior started to mimic how he was right before he became terribly sick. I even asked Dr. Grupp if he was sure there was not even the itsy bitsiest of a questionable spot, and he said no. We are so thankful and relieved!!! Dr. Grupp also said that he looks great, and his blood work was looking good.
We go in a week for blood work to check Elijah's liver and kidney functions before we start his next course of Accutane. Yesterday was the last day of his second course. We always look forward to a break from meds.:)
The only thing Dr. Grupp is concerned about is Elijah's not gaining weight. We will starting getting it checked every two weeks at his pediatrician's office. We are going to try protein shakes to see if that will help. He is always hungry. There is always something in his hand, but he only takes a few bites. If his weight does not progress Dr. Grupp will start him on some appetite-stimulating medicine.
We were so blessed this trip to see some of the wonderful nurses who took such good care of Elijah! We got to say hi to Clair, Karen and Tracy:) Tracy was so sweet! She got down on the hospital floor right outside of the transplant unit to play a game of go fish with Elijah:) We also got to see Laura (NP), Rochelle (child life), Stephanie (social worker), and Stephanie (child life). Each of them took the time to chat with us for a few minutes. Each of them will continue to have a special place in our hearts. We also got to see Dr. Dunham who is just the sweetest anesthesiologist in the world! He was running the board the day Elijah had his scan, but he took the time to come over to see how we were doing! We appreciate him so much.
I was so glad to be able to visit Alyssa and her mom Dana. It did my heart good to see them! We were laughing because Alyssa and Elijah have the exact same color and texture of hair! Alyssa's is a little longer and thicker, but from behind they look the same. Alyssa is doing so much better. She is swollen from the high doses of steroids she is on. She has not needed dialysis lately. Some of her kidney function tests are good, some are not. She looks exhausted! (Dana too) Just by looking at her you can see she has been through soooooooooooooo terribly much! She is still not walking real good from being in bed for almost two months and from the soreness from the central line that was in her groin area. She also still has the biggest central line in her chest for dialysis and blood work. She is on 5 blood pressure meds. and a patch to help control it. The good news is that one of the specialists treating her found journal articles about other children who have had the same complications as Alyssa. The simple version is that the damage to her kidneys is causing her lungs to hemorrhage. That is why she is now on high doses of steroids. Hopefully this will prevent this from happening again. They went home on Nov. 10th, and over the weekend put up Christmas decorations for Alyssa and her brother Christopher to enjoy:) We thank the Lord for strengthening Alyssa and for giving the doctors wisdom to treat her properly. We prayer they are able to be home to enjoy this holiday season.
While we were visiting Dana and Alyssa, I saw a family who was just entering their daughter's treatment during Elijah's second transplant. Seeing her reminded me of how sick Elijah had been and ALL he went through only a few months back. (Her dad said she is doing well--praise the Lord!) Seeing her also served to show me how much the Lord has brought Elijah through! To see him now, despite a few tell-tale signs from his current treatment, unless he lifted up his shirt (which tells an entire story in and of itself), you would never guess all Elijah has been through! What an awesome God we serve! I praise him! I am so grateful! I give him all the glory! He has been sooooo very good to us! I know I still do not fully grasp all he has done. Not just in Elijah's life, but in each of us. He is still strengthening and healing my heart and mind. He is such a gentle, loving father. He has never failed me!
Elijah and I also enjoyed having my sister Tammy with us. I was so grateful for her company and help. It was her fist time at CHOP, and I was so happy for her to see where we have spent so much of this past year and for her to meet some of the very special people who have touched our lives.
On Friday I was able to take Elijah with me to church while I was working on our new nursery! It is beautiful! Dr. Spellman has done an incredible job on it! This was the first time Elijah has been to church in over a year!!! My heart was full of joy as "Uncle Bill", Elder Nelson, Miss Ang., Mr. Ryan, and Pastor Davis all got to see him! Pastor Davis took Elijah through the new sanctuary and even let Elijah tickle a few ivories :) Elijah also got to meet Mr. James--a real cowboy:)! Mr. James even let us borrow his bull riding video, which Elijah has watched countlass times!
Dr. Grupp has lifted more restrictions so Elijah is now able to do most things, and life is now closer to getting back to "normal". He is still has to wait about a month and a half to go to church. He is also not aloud to be around anyone sick. It is so exciting to think that we will be able to be at Christmas service as a family again!!! I am so excited! There are so very many things that I will never ever take for granted!
Thank you for continuing to keep us in your prayers! Elijah goes back in February for his next scan. I will be updating in the mean time. Please also keep Alyssa and her family in your prayers. I will continue to keep you posted on how she is doing.
Alfred and I also want to express once more our gratitude for your prayers and support. It means so much to know that there are so many who continue to check Elijah's site and take the time to e-mail us. We pray the Lord's riches blessings on your families this glorious holiday season!
December 15th, 2006
Merry Christmas everyone! We have so much to be thankful for this holiday season! The Lord has blessed us with the greatest gift! Last year at this very time we were told that our son only had a 30% chance of living, and now he has a 70% chance!!! We believe it is a 100%!
Today Elijah was admitted to CHOP to have a feeding tube placed and to monitor his progress over the weekend. Elijah is doing so well, but he has not gained any weight since transplant. He has grown almost two inches, which makes him look sooo much skinnier. Thankfully he has not lost, but since he has not progressed the way Dr. Grupp said he needed t o, we need to help him start eating better. We have tried everything else to no avail. He eats less now than the first two months he came home after transplant. Dr. Grupp validated my concerns that he does need this help.
The goal is to be able to go home by Monday or Tuesday with Elijah taking in 75% of the calories he needs. We tried to do this at home, but the NG tube that was placed did not stay in for him. Besides, I wanted Elijah to be as comfortable as possible. Who enjoys having a tube down their nose? The ones placed here are very small and flexible. We appreciate Dr. Matt, Elijah's pediatrician, for working so well with Dr. Grupp to get things started and for following up so that we don't have to come to Philli so often.
It was this exact time last year that we came to CHOP for the first time. It is such a wonderful hospital! We have a nice, large room with a computer in it! The first thing we did was look up dinosaurs. Unfortunately, the entire oncology unit is on precautions for the VRS. Elijah was so looking forward to playing in the Playroom, but Childlife is making things extra special so that the children can still have some fun. Hopefully, Elijah will poop in the next 24 hours so that they will not need to do a rectal swab to test him. He tested negative last time when the outbrake first started, but he still has to be checked again. Once he tests negative he will be allowed to at least leave his room. Anytime my dad or I leave the room we have to gown up.
Elijah and I had fun making Christmas cookies yesterday:) He kept saying, "I wuv sugar!" as he licked his fingers and rolled the peanut butter blossoms in the sugar:) I can't wait to go home so that I can wrap Christmas presents and bake cookies with Abby and Elijah:)
Thank you everyone for continuing to pray for Alyssa. She has been home for almost a month! They still come to CHOP three times a week for blood products. They have been replacing her plasma in hopes that it will help her counts recover. She is still on steriods to help prevent her lungs from hemoraging again. Dana asks that we continue to pray for her, they are so grateful for everyone's prayers. Alyssa just had her thrid birthday! Dana said she had the best time at her party!
I will update soon! Thank you to everyone who continues to check Elijah's site and e-mail me. It means so much to our family:)
