January 25th, 2007
A belated Happy New Year to everyone!!! I can't believe it has been over a month since I have updated! I apologize. Once we left the hospital, we had exactly one week to get ready for Christmas, and we all know how busy that gets! Let's see. We came home Monday, Dec. 18th with Elijah doing well with his new feeding tube. We appreciate the nurses on the oncology floor at CHOP so much! It was so nice to see everyone. Elijah was such a good boy! It was hard for him to stay in his room the entire time, but he made the best of it. We even got to enjoy some carolers. Elijah insisted that he stand at his door to listen to them. I wish I could have taken a picture of his face. He smiled the entire time they were singing.
We enjoyed a beautiful Christmas together! Abby and Elijah had a blast opening their gifts!!! We want to thank ALL of the very special individuals who helped make this an extra special Christmas for our children. Alfred and I are truly grateful. The Lord has been and continues to be so very good to us. We still can't believe that even after a year and a half the Lord is still ministering to our family through others. It is such an encouragement to know the Lord is completely aware and in control of our circumstances. He has never, never failed us! He is a faithful, faithful God.
We appreciate those who continue to pray for us, who ask about how Elijah is doing and who continue to check this site and e-mail us. It means more than I can express.
Abby will turn 11 this Saturday! She is growing up soooo quickly!!! Elijah just loves and adores his Abby:)
Elijah kept his feeding tube in for exactly 30 days. In that time he gained 4 vital pounds. I can't tell you how much better he started doing once he had a few day's worth of feeds in him. His color came back, he started sleeping better (he had started sleeping quite a bit), he had much more energy, his stomach pain stopped, he was happier and his other syptoms started to resolve. I couldn't believe the difference! Dr. Grupp said he was literally starving. He had become so skinny. He had no fat on him whatsoever. I actually have chubby thighs to squeeze and chubby cheeks to kiss again:)
However, on day 30 Elijah became sick with a lot of nasal and chest conjestion, and he threw up his tube 4 times. Within a few days he lost 2 of the 4 pounds he had gained. It ripped my heart out everytime it had to be put back down. It is soooooooo uncomfortable for him, and he cried so much and begged us to stop. Dr. Grupp has been so great! He continues to faithfully check up on Elijah's progress. He prescribed a medicine to help him not throw up. So far it is working. If the tube is thrown up again, we will go to CHOP to have a tube placed that Elijah won't be able to throw up. He started showing interest in eating this week for the first time in I don't know how long! Please pray that he starts to truly regain an appetite so that he will eat enough that he won't need the feeding tube. We are currently trying to build his feeds back up to where they were before he got sick. If he does not eat more by the weekend, Dr. Grupp wants to increase his feeds so that he will gain more weight.
We will be going for Elijah's 3rd scan in February. We don't have an exact date yet, but we are believing for a good report!
Elijah still has dental work that needs to be completed, but we need to wait until the tube is out because Elijah gags so much while his mouth is being worked on. He hates getting his teeth worked on. I don't blame him. I have to hold him down, and I feel so badly because he begs to go home.
PLEASE pray for Alyssa and her family. Alyssa is now on complete dialysis. She has fluid in the sac around her heart. She has to have major dental work done. She had another long stay in the ICU. She is most likely going to have both kidneys removed, be on total dialysis for 2-3 months then receive one of her parent's kidneys.
They really need our faithful prayers. Dana continues to drive Alyssa two hours each way to and from CHOP three days a week. This is a very difficult time for them financially. Please pray that the Lord would raise someone up in their town to do a fundraiser. If the Lord lays it on your hearts to do so, donations can be sent to the Alyssa Ricciardi Trust Fund, P.O. Box 0051, South Plainfield, NJ 07080. I know how challenging things have been for us so I can only imagine the financial difficulties they are facing. Alyssa has been in the hospital so much since her second transplant. We thank the Lord for keeping her body and spirit strong. He has spared her life more than once since the complications with her kidneys started.
I want to share two of the many funny and adorable things Elijah has done lately. First, I was getting ready last week, and Elijah slowly made his way up our stairs calling for me. I stood at the top of the stairs to make sure he was okay (he still does not go up and down the stairs very well, but he is getting stronger:)). He says, "Wook mom, wook." He was holding onto the railling with his left had while holding his right hand in front. I asked him what was on his hand, and he replied, "Poop". I said, "What?!" Elijah answers, "Just poop from my bum." I'm thinking why did you stick your hand in your diaper?! After throughly washing his hand and changing his diaper I took him downstairs. I asked him if he had wiped his hand on anything, and he answered, "Yes, Daddy's TV!:)" He goes, "Wook, mom, wook!" And I'm thinking you don't need to point it out. I see it quite well:) Don't you just love little boys:)
A couple of days ago while Alfred was playing with Elijah, Elijah turned to him and said, "I just wuv you daddy. I wuv your heart, and I wuv you." Can you stand it?! He is just the cutest, loving little boy there is!
We will be posting a couple knew pictures in a few days so please take chance to see how well Elijah is doing! I will update soon! I promise:) Things are starting to calm down again. I have been really busy working on the Children's Center at church. It has turned out so wonderfully! It opens this Sunday! I am so thankful to be able to become more involved again. I am so excited about what the Lord is going to be doing in our Children's Ministry! What a blessing and privelage!
Please continue to keep our family in your prayers. Bless you!
January 29th, 2007
Hi everyone! We are doing well. We just celebrated Abby's 11th birthday, together as a family!
PLEASE PRAY FOR ALYSSA. She desperately needs our prayers. She is now in the PICU at CHOP. She was lifeflighted Saturday when she would not respond to her mom and went into having seizures. She is now stable, but they cannot get her blood pressure down. It is 180 over 100. They are most likely going to be removing both of her kidneys, but the heart doctor has to see her to see if she is strong enough to make it through the surgery. The Lord has brought her through so much already! We know he is able to bring her through this. Please pray that the Lord gives her doctors wisdom. Continues to keep Alyssa strong and keep her fighting. Also, please pray for her mom and dad for peace and extra strength. We also need to lift up their financial needs as this has been hard on them financially. Thank you so much! I will keep you posted.
February 19th, 2007
Wonderful news, NED-no evidence of disease!!! Elijah's 3rd scan was clean!!! His CAT scan was also normal. He was such a big boy! He laid still on his own for the CAT scan. This was a first. Normally he is scared of the machine. He was so cute following the instructions:) He was not so happy about having to get another IV, but he was a trooper:)
He is on a second round of antibiotics to hopefully clear up whatever is going on with his sinuses. He has a terrible red "rash" all over his hands and arms from the Accutane. The dry skin gets worse and worse with each course. Last night we had to put burn cream on both arms and wrap them with gauze because his skin was burning him so much. He looked like he had two broken arms:) He said they felt better when he woke up this morning.
Today Elijah and "Tap" spent the entire afternoon making Shrinky Dink animals:) They made rinos, dinasaurs, bulls, horses, sharks and fish... He sat beside my dad at the kitchen table all afternoon. The only time he would get up was to watch the animals shrink in the Shrinky Dink oven. Elijah is so proud of his "aminals" (his pronounciation:))
Our week in Phili went pretty well. Elijah enjoyed playing at Ronald McDonald House. He made me a beautiful picture with my mom. He told grandma that "mommy will be so excited:)!" Elijah and grandma also had fun playing with Playdoh before bedtime.
I was so happy to visit with Dana and Alyssa! She is such a cutie pie! PLEASE pray for them, especially Alyssa. On Thursday Alyssa was moved back up to the PICU because her blood pressure was so high. The surgery to remove both of her kidneys had to be rescheduled for this week. The surgeon wanted to have more doctors in on the surgery with him. Alyssa's surgery will be tomorrow or Wednesday. I will update when I know more.
Thank you for continuing to keep Elijah in your prayers. He is still on the feeding tube. I was hoping he would be off of it by now, but his eating has only slightly improved. He threw up his tube the morning we left for Phili, and he lost two pounds in just the few days it was out. Fortunately, they were able to put it back in while he was under anesthesia for his MIBG.
We praise the Lord and thank him for such a wonderful report! I will update soon.
February 21st, 2007
Wonderful news! Alyssa's surgery went perfectly! Both kidneys are out. No complications or blood loss. Her bone marrow biopsy showed NO neuroblastoma cells, and Dr. Grupp said that her stems cells from transplant had grafted well. All of these are incredible answers to pray!!! What a mighty God we serve!!!
Thank you everyone for continuing to pray for Alyssa's recovery. She will be on full-time dialysis for at least the next two months. Once they see how she is doing, the doctors will discuss Alyssa getting a kidney from one of her parents. Please also continue to pray for Dana. I know this has been incredibly hard on her and Carlo. I just pray they are able to rest and relax some this week.
I know we need to post new pictures. Elijah has changed so much!!! We hope to do that sometime this week. I will update soon!
March 5th, 2007
Hi everyone! Sorry it has taken me so long to update on Alyssa. I just talked to Dana today. Since her kidneys were removed, Alyssa's blood pressure has continued to be high and she still needs blood and platelets every other day. Not good. So tomorrow Alyssa will have a nuclear med. test done. Dr. Grupp will have radioactive material injected into the platelets Alyssa will receive. Later that day, Alyssa will have a scan done to see where the platelets are breaking down. Hopefully this test will provide answers for the doctors. They think the breakdown is accurring in her spleen. If this is the case, they will remove it. Alyssa will then need to be on Penacilan (sp?) for the rest of her life. As you can imagine, Dana and Alyssa were hoping to be home by now. This continues to be very difficult on their family. Please continue to lift them up in your prayers. Please pray for extra strength, provision for their finances, and for wisdom for the doctors. I praise the Lord for keeping her little body strong. I am believing for a miracle! God can do anything but fail!
June 6th, 2007 First, let me extend my biggest apology yet for taking over 3 months to update!!! Shameful, I know! We have been soooo busy enjoying life! What can I say?! It has been a very long time since I have had to run after a busy toddler, and let me tell you, Elijah wears me out! It's a very good thing:)
With apologies out of the way, first things first. Elijah went for his 18 month scan (the last of the every 3 month ones) on May 25, and it was CLEAN!!! Another miracle!!! We PRAISE the Lord for this great report!!! He will now get scans and lab work every 6 months. He now enters the 18-36 post diagnosis phase were the chance of relapse decreases from the initial 18 months. We are so blessed! He was such a big boy this trip! His first morning in clinic went rough, and he was trying so hard to be a big boy:( It took them 8 pricks and digs to get an IV in him. My heart was sooooooo broken. Both of his arms were so bruised. Of course they spoiled him for being so big and brave. Elijah was so happy to be able to say hi to Alyssa and give her a hug and kiss during our visit with Dr Grupp, but Alyssa wanted nothing to do with him that day:)
After his first scan my mom and I took him to the Museum of Natural Sciences so he could see the dinosaurs. Elijah was enthralled:) He would not let me take his picture with the dinosaurs, however, because it was "too dangerous":) The night before we arrived at McDonald's House, and Elijah had a wonderful evening! Volunteers from Ellwood Zoo came, and Elijah got to touch a baby crocodile, a rock turtle and a California King snake (mommy was not in the room for this one:)). Elijah's favorite was the snake. Go figure. Then he enjoyed a safari birthday party with the works!
April 2007: Now I am going to back up. Hopefully, I won't confuse anyone:) We celebrated Easter at home as a family!!! I can't tell you how many Easter eggs we died or how much food we ate at Me Me's, but we had a wonderful holiday:) We spent last Easter at RMS as it was the night before his first stem cell transplant. I remember being up till midnight decorating Easter cookies with Abby and Elijah trying to make the most of every moment:) The next morning Alfred and Abby helped us get situated in Elijah's room in the transplant unit, and I (literally) cried myself to sleep as soon as they left the room for home as I held our sleeping son in my arms. I felt so far from home and my family, and I was so afraid of what Elijah was going to go through. The Lord truly ministered His peace and strength to me. He loved me and Elijah through so very many individuals.
Of course I spent a lot of time during this month thinking about ALL he has brought our family, in particular Elijah, through. Great is His faithfulness! We are all doing sooooo much better as things have become more stable and settled. I have found that I am still going through a tough time emotionally--so very many memories and thoughts, some sweet some bitter. The greater my weakness, the greater I feel His strength carrying me. The greater my sadness, the greater I feel His loving arms around me. The greater my grief, the greater I sense the comfort of His Holy Spirit. The greater the trial, the greater I see His mighty hand moving on our behalf. I just don't have the words to express how he is using this in my life. I couldn't live even one day without him. Even the pain I feel deep inside that seems at times unbearable, he makes bearable. Even the emotions I can't explain I can take to him, and he fully understands. I am so thankful to be saved.
May 2007: Make A Wish trip and Elijah's 4th Birthday!!!!!!!!!!!!!
This was a wonderful month for our family:)!!!! We were all sooooo extremely excited to go on Elijah's trip. He just could not wait to go to Disney:) We had the BEST time. I can't even describe with words how truly wonderful our trip was. We were just blessed, blessed and blessed some more:) Can I tell you that we all needed to get away--as a family. We enjoyed our time together sooooooooo very much! Both Abby and Elijah were so well behaved! The volunteers from Make A Wish and Give Kids The World are the best of the best!!! We felt like royalty:) Our every need was thought of and met. We did not wait at the airports, nothing! Elijah even got to sit in the cock pit. He thought it was pretty cool.
We had the most beautiful weather for our trip. Our villa was gorgeous, and GKTW is the most wonderful place we could ever stay!!! WE wish we could go back!!! We swam everyday! Elijah got to ride horses and ponies (his favorite:))! We ate ice cream I don't know how many times a day. Abby's favorites were the pool and the concession stand at the movie theater, and Elijah's favorites were the train and the Dino Putt Putt. The kids got to play the world's largest outdoor game of Candyland. We also celebrated a wonderful tropical Christmas:! Elijah got to make a special pillow for Abby and himself from the special pilllow machine in the Castle at GKTW. He was so proud:) Elijah was most proud of his "star". He now has his "star" on the ceiling among 55,000 other little shining stars who have stayed at GKTW. This was the wish he made at the Wishing Well inside the Castle,"I wish I was a cowboy with a big horse so I could ride around and help all the peoples." I just adore him:)
We totally enjoyed Sea World, Universal and all the Disney Parks! I believe Elijah's favorites were Animal Kingdom and Magic Kingdom. He also loved Jurassic Park at Universal. We had a fun family dinner at Bubba Gump's there. I think we laughed more than we ate:) We also enjoyed the Rain Forest Cafe at Animal Kingdom. It is amazing inside! Abby and I decided our favorite was Downtown Disney. We spent our last evening there with Dana, Alyssa, Christopher and Carlo (we have pictures). We had an amazing dinner at Fulton's Crab House.
Elijah was sooooo happy to see Alyssa! He rubbed her back and gave her kisses and hugs. He fell in love with her older brother Christopher:). Dana and I were so glad that Carlo and Alfred got to talk because they don't really have any other guys who understand that they can talk to. It was hard saying goodbye!!! WE are hoping that we will continue to get together. We have such a good time together! They feel like family to us.
Please keep praying for Alyssa. She is now active on the kidney transplant list. And while she is definitely doing better than the last time I updated, she is still very sick. She gets dialysis 3x's a week, she is not walking very much and her belly is sooooo swollen. She just had scans done which showed no signs of cancer:)!!!!!!! But the scans did show fluid in her belly. Also please keep praying for Dana. This is just sooooo difficult on her and her family.
We want to send out a very special "Thank You" to the boys and girls in Mrs. Candy Spahrs class at Greater Works Academy who gave Elijah an extra special birthday gift. They raised $100 for Elijah to take to Disney so that he could have an extra special time!!! Doesn't that just bless your heart?! I can't tell you how they have continued to be such a blessing to our family. We have a class of pray warriors lifting up our little guy everyday! They have such a special part in what the Lord is doing in Elijah's life.
Of course we had a super special birthday party to celebrate Elijah's 4th birthday! What a miracle! I was so grateful for all the craziness and all the children running around! Aunt Donna, Uncle Gene, Lori and Mandy even came for the celebration!!! It meant so much to us to have them at the party! Elijah said he did not want to be a birthday boy, but when my mom told him that he would be getting lots of presents he told us, " Okay, I will try very hard.":) When he came out into the yard and saw all of the decorations he was so excited:)
For more good news! We were able to take Elijah's feeding tube out the second week of May. He is finally eating!!!!!! Alfred and I still look at him while he eats and can't believe it. We were so worried that his eating would not kick back in. Now he is a little piggy:) He is also maintaining his weight pretty well. He is starting to look a bit skinny to us, but he is still eating like a bird-a little bit all day long.
Elijah will now begin to be re -immunized as it is now a year from the beginning of his first transplant. Just in time because he will be starting preschool in the fall. He will also need to have a special hearing test done to see how that is doing. He had high-frequency hearing loss in his left ear from the initial chemo he received, but this will check to see if it has gotten any worse. Elijah also just had surgery on his mouth June 4th to fix quite a few teeth that had been damaged from treatment. Hopefully, his teeth will be fine now.
I am also so incredibly proud to share that Elijah is potty trained!!!!! He is doing so well with it! He was so stubborn about not going in the potty, but once he was ready he has tackled it with great determination:) Oh the stories I could tell:)
I will be updating more frequently. I hate falling behind with this because I forget to mention so many things, and I don't want to forget them. But this is very emotional for me, and sometimes I'm just not able to do it. I know that may sound silly, but it is true none the less.
Thank you to everyone who continues to faithfully check Elijah's site. It means so much to us! Don't give up if you notice a lull. Also, don't forget to check ALL the new pictures we have posted!!! They are adorable! My favorite is the one of Elijah sitting on the horse with his riding helmet. He just looks so perfectly content.
November 20th, 2007
Happy thanksgiving everyone!!! We have so very much to be thankful for!!! I know it has been quite some time since my last update. Elijah is doing so well!!! He started pre-school, and he his loving it!!! I wish I could convey just how absolutely adorable he his about school. For him, everyday is like the first day of school. His enthusiasm only growsJ Tomorrow he will be a white and red cow in his holiday program. He sings his line with the sweetest voice like only he can doJ
Every time I pick him up from school he must show me his school work before he gets buckled up to go home. One day they made Playdoh tarantulas and he cautiously warned me, “Mommy, don’t be afraid it’s just ‘pretend real’”J Elijah continues to adjust to the new activity in his schedule. I am so glad I put him in the afternoon class because he still tires out so easily. Of course with exhaustion comes crabbinessJ This will pass with time as his body continues to become stronger.
Last night around 4:30am he rolled over, put his arm around me and whispered, “Mom, remember I love you.” Boy did he melt my heart.
He will have more dental work done as the treatment did a real number on his teeth. We do our best to keep them as clean as possible, but there is just a lot of decay. Dr. Frankel is doing a wonderful job of caring for them. Elijah is such a big boy. He has been a trooper about not eating a lot of the goodies most children take for granted.
While his diet is not very varied, Elijah is still doing much better about eating. We are thankful for that. He definitely hit a growing spurt. He outgrew his clothes from last year! Unfortunately he has not gained any weight with the new growth. We’ll see what Dr. Grupp has to say next week. Elijah also continues to deal with his IBS. I pray it will heal someday soon.
We go next week Nov. 28th through Nov. 31st for routine testing and checkup. Elijah will have an audiology test, EKG, ECHO and MIBG scan. We are believing for good news!
We are also extremely excited to see Dana and Alyssa during our stay. Alyssa is doing better, but over the past several months she has been admitted a lot, including several stays in the ICU. Please continue to lift them up in your prayers: healing for Alyssa, wisdom for the doctors, provision for their needs, and extra strength for Dana.
I will update with the results from Elijah’s visit next week. We will also be posting new pictures. Wait till you see how good he looks!
We pray you all enjoy a very blessed Thanksgiving holiday! Thank you for continuing to check up on our little guy and for continuing to keep him in your prayers!
November 31st, 2007
CLEAN SCANS!!!!! We thank and praise the Lord for this wonderfully miraculous news!!!!! Elijah is now exactly two years since diagnosis and beginning of his treatment! What a mighty God we serve!!! Our trip went well. We were so fortunate to see many of the wonderful individuals who gave Elijah such incredible care. We are also grateful that even though Elijah has had increased hearing loss in both ears, it is in the high-frequency range so it will not affect him. His teeth are still deteriorating, but our prayer is that his permanent teeth will not be affected.
We are so looking forward to the upcoming holiday season!!! We will be decorating the house this week—Elijah is soooooo excited!!!
