May, 1st 2006 Today has been a day. Up until last night, I didn't think transplant was so bad. I have now changed my mind. Today was pretty tough for Elijah. Although his response is typical for transplant, for him it is not. His mucositis has gotten worse. He has it from his lips to his bottom. His mouth is bleeding a bit, especially during mouthcare. Today the lining of the left side of his came off during mouthcare, and he was shaking from the pain. It was all I could do to hold him. He cries whenever he wets his diaper because he is so raw from the chemo. It is extremely difficult to see him go through this. I continue to lift him up to the Lord. Elijah and I will pray together quite often, especially when he is having a bad moment.
On a better note, the physical therapist was able to finally get Elijah to interact for a bit today. He popped bubbles with his little piggies. He even cracked a smile with one of the games they played. It warmed my heart to see him enjoy himself for a bit.
May 3rd, 2006 Today is a good day! Elijah is talking more, and he is even painting!!! It is so good to see him playing in his bed! Yesterday he was not feeling so hot. He was throwing up alot of blood so they gave him platelets, and that has helped tremedously. Today he needed blood. He is not throwing up nearly as much, and he has even taken a few sips of gingerale. A welcome reprieve for the both of us.
Elijah had a wonderful surprise this morning! Cookie Monster and Super Grover came for a visit! Elijah asked them, "Where's Big Bird?":) He got his picture taken with them, and they gave him two small toys and a book.
May 4th, 2006
Elijah turned 3 years old today!!! Much to my dismay, however, Elijah was not feeling so good. He woke up at 6am, and I wanted to sing happy birthday to him, but he wanted no parts of it! He fell back to sleep around 10am, and did not wake up until 6pm! He was still very crabby because he was in pain. once the doctor increased his PCA, Elijah was in better spirits. He was very happy to see grandmom! He even conceded to open up the birthday presents that Elijah's little buddy Cole and a dear friend Mr. Hartnett had sent up for him. Elijah had such a good time with them!!! Stephanie from Child Life gave Elijah a remote control dinosaur that he proceeded to use to eat the other dinosaurs he got for his birthday:) Elijah gets the biggest kick out of hearing the dinosaur's roar.
Here is a cute a little story (side note). I was talking to my friend Danielle (Cole's mommy), and she told me that when they went for a walk around the neighborhood this week, Cole pulled his Cadillac Escalade into our driveway and told his mom that he was picking up Elijah to go for a ride--is that not too adorable?! What's even funnier is that Cole can drive his Escalade better than most adults drive their cars! Cole is so sweat that he even lets Elijah take the wheel!
May 5th, 2006
Today was a good day for Elijah. He woke up at 9am, and was my sweat little guy again. My mom and I were like "Our Elijah is Back!" He was talking and playing with his toys. He went to the playroom for physical therapy, and he even walked back to his room!!! I was so happy to see him walking because alot of times he won't even stand up because his legs and feet hurt him. He looked so adorable! He had his mask and hospital pajamas (we ran out of his), and here he comes walking down the hall with his big pole of meds following behind him. When he saw me he walked with all of his might to get to me as fast as he could!
Elijah went the whole day without throwing up!!! Yeah!!! It was a welcome reprieve for all of us. My mom and I enjoyed him so much today. His mouth is not nearly as swollen as it was so Elijah gave us quite a few smiles today! I just love those dimples!!!
Elijah is still not eating, but he fed his dinosaur some Dorito chips. I guess it is cathartic for him. He can't eat so the dinosaur eats for the both of them:) I felt bad because today is the first day he complained of being hungry. We gave him what he asked for, but he couldn't eat it. It is a good sign though that he has an appetite.
May 6th, 2006
Today is a different story. Elijah does not look so hot. He is just not himself. He woke up at 11:45am with guns blazing:). He got platelets this morning so the Benadryl helped him fall asleep for a long afternoon nap. When he is feeling this yucky I would just rather see him sleep and get the rest his body needs.
The doctor came in to see him and said that Elijah is starting to engraft. This is why he is feeling so yucky. When new cells start to form they attack the areas of the body that the chemo has damaged. These areas then become more inflamed, and it is a painful process. During this time you tend to see fevers, increased vomitting and crabbiness. All signs of progress, but Elijah probably wouldn't agree:).
When Elijah woke up from his nap this evening he was still very aggitated. We weren't sure if his meds were bothering him or if he was just really feeling that poorly. He was up from about 6pm till 11pm. He fell asleep snuggled up to me after he finally found a comfortable position. It was, I feel bad saying this, a welcome slumber for all of us. It was just a tough day for him.
May 7th, 2006
Today is a better day. Elijah is in a little bit of a better mood (baby steps:)). His face looks soooo much better. His eyes are not so dark, and his face is not so puffy. He even ate two ice pops!!! His belly hurt afterwards, but he didn't throw up.
Elijah played with his dinosaurs and he even painted two pictures this afternoon. He also gave his horses (Mother and Psycho) painted on saddles:) He was much more pleasant this evening. He even asked to call "Tap". Talking to "Tap" put a big smile on his face.
As he fell asleep tonight he was actually munching on some Doritos from the bag he was holding in his little hand!
I talked to my sister Tammy last night. Tammy, Camilla, and Lisa are working so hard to make Elijah's Longaberger bingo fundraiser the best. The baskets are so beautiful, and they are filled with the most wonderful things!!! There is a minimum of $50 worth of stuff in each one. Many of them have at least $100 worth of stuff in them. We are going to have a wonderful time! I hope to see you there!
WHEN: Sunday May 21st
WHERE: Richland Firehall, Scalp Ave.
TIME: 2:00pm (doors open at 1:00pm)
COST: $20 per ticket in advance, $25 at the door
FOR TICKETS: call Tammy at 814-495-9209 or Camilla at 814-262-9772
May 8th, 2006
We received good news from the doctor today!!! Elijah has an ANC of 500! He has 50 cells! They are taking his TPN from 24 to 18 hours a day to help bring his appetite back, and he no longer has to take the yucky pink antibiotic 3 times a day. Yeah!!!
We are so thankful for how much better he is doing! He keeps saying he wants to go home. If everything goes well, we are looking at another week or so.
May 9th, 2006 Today Elijah woke up at 12:30pm! He has 100 cells, and his ANC is 804. Elijah was not to thrilled about physical therapy today. He is off of "strict" so he is allowed to leave his room and walk in the transplant hallway, but only if he wears a mask. Well Mr. Elijah did not want to wear a mask today. I wish I had had my video camera with me because Elijah's response to the physical therapist as she continued to reinforce that he had to wear a mask was truly priceless. At first he was doing the crossed arms with the "you can't make me do this face". Once he realized that she meant business he hung, not only his head, but his entire upper body in defeat. His hands were about eight inches from the ground. We were laughing so hard! Needless to say, we decided Elijah was not up for it today, but at least he took a small walk and stood on his feet for a few minutes. He is really doing well, but when he has to be on his feet he complains that his feet and legs hurt. I'm sure that as soon as we get home Elijah will regain his strength quickly.
Later in the day Elijah had a "paint party". After he was done painting his pictures he decided to paint the bed table. He then painted his arms up to his elbows, and finished with decorating his bed sheet with hand prints. He had a wonderful time! It took me a few extra minutes to clean up, but his enjoyment made it well worth it.
Elijah did not drink anything today. He was so hungry from the moment he woke up till the time he went to bed. He asked for so many different things. I would bring one thing after the other, but he would take one bite and say he couldn't eat it because it was yucky. Chemo definately takes its toll on the taste buds. He finally enjoyed about 6 Goldfish crackers, and I was happy he at least got a little something in his belly. At 12:25am, he bolted right up and threw the little bit he had gotten down right back up. In his little shaken up voice he goes, "I phrowed up mommy, I phrowed up!" We cleaned him up, and he fell right back to sleep. His body just needs to readjust to him eating again.
May 12th, 2006
Today started off a little iffy. The first thing Elijah said to me was, “Mommy, pray for me. My belly don’t feel good.” We weren’t sure if we were going to be able to go home when the doctor did her first round because Elijah was still not drinking enough. However, when daddy and “Tap” arrived Elijah perked right up! When the doctor checked back in the afternoon Elijah was doing much better.
Our ride home was a little longer this time—we hit rush hour traffic. The entire ride home Elijah kept saying, “I want to go home.” We finally got home around 11:30pm. Elijah was SOOOOOOOOOOOOOOOOOOOO happy to be home!!! His eyes watered, his voice became shaky and he said, “I home. I so happy. No “tubbies”. I feel betters.” My heart just absolutely broke. I know he went through so much, but to see so much emotion in a 3 year old little boy makes me wonder what is going through his little head. He is just sooooo grateful to be home. We all are!
May 13th, 2006
Today was our first whole day home. The first thing he said to me when he woke up was (again with tears in his eyes and a quivering voice), “Mom, I home. I so happy. I home. No tubbies. I getting betters.” Alfred and I had tears in our own eyes!
Elijah’s belly was hurting him a good bit. Even with his pain meds. in him, he complained. He really didn’t eat, but he drank pretty well. He loved playing with “his Abby”. He slept a lot, but he needed the rest.
We had such a beautiful, sunny day! It was so nice just to get outside! I so enjoyed having one on one time with Abby! I even got to go to lunch with my mom and sister. We enjoyed quite a few laughs! It still hasn’t sunk in that we are home. I’m sure I will adjust quickly?
May 14th, 2006
Happy Mother’s Day! Elijah is doing better today. His stomach is not hurting him as much, and he is starting to eat! This is a mixed blessing. Trying to find something that tastes good to him is no small task. He has little or no taste left, and the taste that is left is totally out of whack. Nothing tastes right to him. The chemo has destroyed his tastes buds. I feel so bad because he is so hungry, yet he takes one bite of food and says, “I can’t eat that. It’s yucky.”
It will take quite a few months after his second transplant before his taste starts to come back. And even that is a process. It doesn’t all come back at once.
May 15th, 2006
Elijah ate a piece of pizza this evening! He was getting so crabby from being so hungry. He was like a new man afterwards?
I still have to give him his injections at night, and he cries so hard. He says, “No shot, mommy, no shot. It burns, mommy, it burns. No hurt me.” I hate it even more now than before. It does not get better. It gets worse. He is a trooper. Wednesday he has his first clinic appointment. My hope is that his ANC will have reached 5000, and we can stop the injections.
May 16th, 2006
Today’s palatable foods were strawberry poptarts, cheese sticks and spoonfuls of peanut butter? Elijah was much more playful today. I was cleaning up messes left and right?
Tomorrow is his first clinic appointment. I am sure everything will be fine. The only thing I anticipate is Elijah possibly needing platelets or fluids. His red blood cells have been holding up pretty well, so it is a possibility that he may need them, but not very likely. His platelets have been holding for 4-5 days so we’ll see what his counts are. His urine was a little concentrated so they may need to give him some fluids. Other than that I believe he is doing great!
The weather has been to cold to take Elijah outside, but I am looking forward to being able to let him enjoy being outside. He loves to run around!
