August 20th, 2006
Wow, it has been almost an entire month since I have last updated! Elijah just completed his site-specific radiation on August 18th. It was so nice being able to talk with Alyssa's mom during the six days. We even got a couple of pictures of Elijah and Alyssa together. The doctors and nurses were just wonderful with Elijah. They even gave Elijah and Alyssa a "last day of treatment" party. They both got a cake and a present. The nurses even put up a sign and had their recovery areas set up so nicely:) What a wonderful surprise!
He was definatlely in rare form this round of treatment. On his first day of treatment he indignantly pulled his mask down, stuck his tongue out at the nurse and then pulled his mask up! On our way to clinic in the elevator he proceeded to shush everyone. He was in a wheel chair in the center of the elevator, and he shushed the people on the right of him first then those on the left of him. I like to blame the anestesia for that incident:) For the next week and a half he would not talk to anyone or allow anyone to talk to him. For him enough was enough:) Dana said Alyssa was cranky to, but I know she was not as bold as Elijah in conveying her irritation:) They just did not feel so good.
Elijah has been more tired and his belly has been hurting him. Since we came home he has thrown up a few times. He is starting to eat and drink much better though. He will go back on Sept. 13th and 14th for his first MIBG and to get his T-cell infusion on the 14th. We are hoping that he can get his line out on the 15th while we are still there.
Elijah has gotten thrush for the second time since his second transplant, but it is normal for transplant patients because of all the antibiotics they are on and with their numbers being down. He is doing so good with taking his meds. We were off to a rough start, but now he is taking it without spitting most of it out.
Elijah will start taking Accutane on Sept. 1st PLEASE pray that he will learn how to swallow it. He will have to take two pills a day for two weeks on then two weeks off for six months.
Elijah recieved an extra special surprise this week! Cedar Works donated an incredible outdoor play set for him to enjoy! Thank you Cedar Works!!! He is enjoying soooooo much!
September 6th, 2006
We have hair :) !!! Elijah is finally getting his hair in. He looks sooooo different!!! He continues to eat and drink well, and now he is taking Zantac which seems to be helping. He only complains of stomach pain 1-2 times a day verses 2-4. He is holding his weight at 30pds., but we are trying to get him to gain a little. We are going to try to get him to drink a half of a can of Pediasure and see if that helps. He eats like a bird all day long, and even though it is all high-calorie he is not gaining.
Elijah is now taking the Accutane which proves to be quite the ordeal. God bless him because he has to take two capsules twice a day two weeks on and two weeks off for six months. It would be best if he swallowed them, but the best we have been able to do is to get him to bite them, get the medicine out and spit out the shell. I don't know if he is getting enough of the medicine so I am hoping that he will soon swallow them. Dana got Alyssa to swallow her pill, and I was totally amazed! I asked her how she did it, and she said she told Alyssa if she didn't swallow it she would have to get a shot. It worked! I tried it with Elijah, and he was like, "Yea right":) I even promised him that I would take him to go ride Mother and Psycho and that failed. We will keep trying. He has red raccoon circles around his eyes. The irritated skin hurts him. His lips are starting to get the same way. Dr. Grupp said to use Aquaphor on his mouth, and it works to ease the dryness. These are both side effects of the Accutane.
Next week on the 13th and 14th we will be at CHOP. Elijah will get his T-cells back, his first MIBG scan and his line out!!! Only one more dressing change to go!!! The Lord has brought Elijah and our family through so much! What a mighty God we serve! The following week Elijah will get his teeth cleaned and the week after that he will start getting his teeth worked on. His teeth have been so damaged from treatment, but it is a fixable side-effect.
This is also the last week Elijah must wear a mask! September 14th will be his Day +90! It is so hard to believe that this same time last year we came home from vacation and Elijah started to become so very ill. When I think of ALL the Lord has done and ALL he has brought us through and ALL the people he has touched to bless us I stand in complete amazement! He has done exceedingly and abundantly above ALL we could ever ask, and I praise him!!!
I want to thank all of you that continue to check his progress on this site, who continue to e-mail me to let me know we are in your prayers and that you are thinking of us, and who continue to bless us financially. Each of you have a very special part in the testimony the Lord has given our family! In Genesis 12:3 he promises, "...I will bless those that bless you..."
I will update and let everyone know how next week goes! Alyssa went for her first scan last week, and her MIBG was CLEAN!!! What an incredible miracle!--especially with a disease where 7 out of ten children will not make it. We are believing for the same miracle!
If you haven't check out the new pictures we added!
September 17th, 2006
Elijah is doing very well. We were at CHOP on the Wednesday 13th and Thursday 14th. Elijah got his T-cells back, had his first scan and got his line out. He is sooooo happy to have his "toobies" out! Alfred and I are soooooo thankful that I don't have to do painful dressing changes!!! Elijah did well with the T-cell infusion. Although I am a fan of cream corn, I will most likely never eat it again. Dr. Grupp said there would be a stronger smell because there is more of the preservative in the T-cells than the stem cells he had previously recieved, and he wasn't kidding. Our van smelled like cream corn, our room at RMH smelled like cream corn and we breathed it in the whole way home. Elijah got the biggest kick out of breathing in my face and watching me turn green:)
His first scan was normal! Elijah is still in remission!!! We PRAISE the Lord for this absolute MIRACLE!!! Hallelujiah, he is worthy to be praised! He has been so good to us!
Elijah's hair continues to grow in dark. He looks so cute! I wonder what color it will end up being. I am still trying to get use to him having hair again.
He has lost a bit more weight so we are going to try some other things to try and get him to at least hold his weight before Dr. Grupp would try appetite-increasing meds. Other than that he is doing great!
Last week Alfred was changing Elijah's diaper and said, "My goodness Elijah this is a really big poop!" To which our son replied, "I know, daddy, I did it all by myself!" :)
He is still not ready to potty train even though we continue to leave the potty out and encourage him to use it. We'll get there.
Please pray for Alyssa. She has developed minor kidney damge from the radiation. It usually shows up around four months after transplant, and Alyssa is four months out. It is really hard on Dana. I can only imagine what she and her husband are going through. She has to take Alyssa to CHOP every Mon., Wed., and Fri. for blood and platelets because her kidneys are eating them up. She is bloated from all of the fluid she is retaining, and her urine is very dark. Dr. Grupp said it is reversible, but it will take time. Elijah prayed for "Awissa" last night before he fell asleep on my tummy:) We are also still working on him sleeping in his own bed:) It is hard when he takes my cheek in his hand and says, "Mama, I "wike" you soooo much."
I really thank the Lord for bringing Dana and Alyssa into our lives. It helps going through it together. I enjoy talking to her, and our children are only one month apart in terms of treatment. The Lord knows what we need!
We go back to CHOP in a month. I will update soon. Thank you for continuing to keep our family in your prayers!
September 21st, 2006
Hello everyone! Today is day +97!!! Elijah no longer has to wear a mask as of day +90. Elijah enjoyed his first bubble bath in almost a year last night! He was in the tub for at least 45 min.! I had to drain the tub to get him out:) When he woke up this morning he asked me to get a bubble bath and again this afternoon! As small as it seems it is huge for him.
Today we were playing. He was a cowboy. I was his horse:) He placed a "saddle" on me and away we went. When he was done riding, he took my saddle off and brushed my "mane" then rubbed my "nose". I told him that he took such good care of his horse, and he replied, "I "wike" them right!" Don't you just love the things that come out of our children's mouths:)
This evening when my dad stopped over to say "hi" Elijah asked him, "Guess what's missing, Tap?" Elijah pulled up his shirt to show my dad his "toobies" were gone. It was so cute. We are just so thankful to enjoy this new season.
I wanted to share a quote from Joni Eareckson Tada that my mother shared with me a long time ago, and it continues to be a blessing in my life:
It is a glorious thing to know that your father God makes no mistakes in directing or permitting that which crosses the path of your life. "It is the glory of God to conceal a matter." It is our glory to trust him, no matter what.
I encourage you to take a moment and really think about what she was saying. It is a powerful statement. I pray it blesses and strengthens you as it has me.
I did something I have never done before--for good reason. I went onto other Caringbridge sites of children fighting neuroblastoma. I was checking on some families we have met along our journey, and their sites took me to other sites. It is so difficult to read their personal stories. On one hand I praise God all the more for all he has brought us through and the fact that Elijah is in remission!!! It is soooo huge of a miracle that I know I still cannot fully comprehend it! It is so rare! On the other my heart is so heavy for those families who have not been so fortunate to enjoy their child being in remission, or their child has gone into remission only to relapse. I hurt for ALL they are going through; yet I know that the Lord is in control, and I CAN TRUST him. I know he is doing a great work to increase my faith in him. Elijah is healed! I am so grateful. Yet as we enter this new part of our journey with five years of scans ahead of us I still need to draw on my faith in him and his strength in me to fight the thoughts that come into my head at times. I am so thankful that I do not need to go through this alone. I am also so grateful that he is so real, knows us so intimately that I can be honest before him, say how I feel, but then be able to confidently say, "but this is what your word says, and I am trusting in you!" Afterall, it is my glory to trust him, no matter what. :)
September 24th, 2006
Here we go Steelers, here we go!!! Hello everyone! Elijah has had a wonderful weekend! He keeps eating and eating and eating some more! Elijah received two very special surprises yesterday. First, my cousin Lori, her husband Chris and their beautiful daughter Mandy bought Elijah a Jeep for him to cruise around in!!! Elijah was soooooo thrilled! It has been raining, but he keeps asking to "sit in his car":) Mandy (who is 5 and has a jeep of her own) asked her mom and dad if she could trade hers for Elijah's because his has a radio:)! I just love the way our children's minds work!!! Mandy also painted a picture for Elijah, which he appreciated so much! Last night it was still wet, but this morning he asked if it had dried so that he could hold it:)
Elijah has been asking for chocolate Easter bunnies for the past month. I have not been able to find them anywhere. Well, my Aunt Donna asked her friend from Sarris if she could get some chocolate bunnies made for Elijah, and chocolate bunnies she got! Elijah could not have been more pleased:) He laid them all out and sat down beside them pleased as punch! When it was time for bed we had to take all the little bunnies with us. I told him it was time to go to sleep, and he said (as he laid on his belly with his chin cupped in his hands, propped up on his elbows), "I'm just "wookin" at all my bunnies":) It was too cute! When we woke up this morning the FIRST thing we had to do was go downstairs to see his big bunny:)
We appreciate their loving kindness to our family so very much. Mandy always asks how he is doing and if I have a picture of him to show her when we visit them--how precious is that! Mandy and Abby are kindred spirits who have the best time together! We are truly blessed!
We go in about two weeks for a check-up with Dr. Grupp. Tommorrow, I will take him to his pediatrician to get his weight checked. I expect to see that he has gained something based on his eating habits this past week!
Please continue to pray for Alyssa. Her kidneys are only functioning at 40-50%. She is on blood pressure medication, which is now thankfully under control. The damage is reversible, but it will take time. She was inpatient at CHOP for three days last week. While there she had a pic-line put in because she has to continue getting blood and platelets three times a week until her kidneys heal. Also please pray for extra strength for her mom and dad. It is a two hour drive each way from their home in NJ to CHOP in Phili. Thank you. I know they appreciate your prayers.
