April 8th, 2006: We will be leaving for transplant April 16th, Easter Sunday.
April 9th, 2006: This week is very hectic, with preparing to leave for Philadelphia for four to six weeks. Elijah is doing well, being a typical two year old. He plays hard but tires easily. His days and nights are mixed up, so mom and dad are exhausted. We know parents out there understand.
April 9th, 2006: We have one week until we leave for transplant.
Dr. Grupp told us to let Elijah have some fun before he comes to transplant
because it will be a while (6-12 months) before he can do some of his
favorite things again. So we did just that! We had a wonderful day!
Alfred, my mom and I took the kids and met up with my sister, Charlie and
the girls to go riding horses. Elijah's favorite thing to do! Elijah's
Uncle Charlie's Aunt Gail (that's a mouthful) allowed us to come ride her
horses. Abby and Elijah had the best time! Gail said Elijah is a natural.
He sat so well on the horse and he laughed when "Mother" began to trot a
bit! Elijah's favorite part was riding through the forest with Gail. Abby
rode Psycho and is now asking us for lessons. Alfred and I so enjoyed
seeing Abby and Elijah be kids! It was so wonderful to get out of the house
and spend time together as a family. When we came home, Elijah named two of
his almost hundred horses Mother and Psycho. Until now, all of his horses'
names were "horsey".
April 16th, 2006: Easter Sunday!
Today we packed the family van and were off to Phili. Elijah couldn't wait
to get to the playroom at McDonald House! We were able to eat dinner
together, and at 12:30 am we decorated Easter cookies!
April 18th, 2006: Day one of transplant. Elijah is in not in the best of moods!
He knows. Alfred got his excercise for the week moving us in. We are all
a bit teary-eyed. We don't want to say goodbye! It is definately harder
than I thought it would be. Elijah fell asleep, and Abby crawled in bed
with him and snuggled up. When it came time for them to go, Abby was such a
trooper! Big smile on her face and tears in her eyes she gave me a whole
bunch of hugs and kisses goodbye. Once her and Alfred left, I had a good
cry while Elijah was still sleeping. I'm just going to miss being there for
them so much. I felt better after I got that out. I tried not to think
about being away from home this long, I figured that we have been doing it
and so it wouldn't be too bad. But this is going to be harder than I
thought. I just love my family. I am so grateful to be with Elijah.
I wouldn't have it any other way, but it tears my heart out not to be with
Abby.
April 22nd, 2006 Elijah was a ball of energy his first day of transplant. We spent alot of the day going back and forth to and from the playroom. Day 1 is hydration. Day 2 Elijah started chemo, and was still playing and eating. He is even being such a big boy taking his oral meds. (3x a day!). This is a major answer to prayer! Every time he gets his oral meds. he also has to have his mouthcare done. I stand outside the room while the nurses do this. He screams because it burns his mouth so bad. It rips my heart out. I can't imagine what it will be like for him if he gets mouth sores.
In the middle of the night between day 2 and 3, nausea set in. Even with antimedics Elijah is still vomitting and dry-heaving. He hasn't eaten since Day 1. He slept Day 3 away, literally. Today is day 4, after being up between 11pm and 3am last night, and Elijah woke up at 11:15am. Right now he is in the playroom with grandmom. We weighed him before he went in, and he has lost about 2 pounds since day 1. Day 1 he was 14.0kg and today he was 13.0kg.
Elijah and grandmom just came back from the playroom, and Elijah has consented to eat a blue ice pop. Yea!!! His mouth and lips are so dry. He keeps making this funny lip smacking gesture. Hopefully his blue ice pop will help.
He is a little trooper. He is such a big boy! He doesn't make a big deal when he vomits. He is very matter-of-fact about it. He always tries to let us know, does what he has to do, we clean up and go on with what we were doing before the disruption. He doesn't make a big deal about it. What a turkey!
Well, I'm signing off for now. Thank you for continuing to keep Elijah in your prayers. Especially pray that he does not get bad mouth sores.
Elijah has his first fever so they will run blood cultures and start him on antibiotics. This is to be expected, but it sure came very early this time. Usually he has not gotten one until about two weeks after chemo when his counts have dropped.
April 25th, 2006 Transplant Day!!!
Elijah receved his stem cells today. He still is not eating or drinking. He is still extremely nauseous, but he is still dealing with it with tremendous grace. I am so proud of him! All of his nurses say he is just the cutest little guy!
I don't know what Alfred would have done if he had been able to be here because Elijah's body was secreting the preservative that his stem cells were in, and he strongly smelled of cream corn. (one of Alfred's least favorite foods) It could have been worse, but the smell made Elijah sicker than he already was-poor little guy!
April 26th, 2006 Elijah was rather sick this morning. He didn't even want to go to the playroom. We did our usual morning routine, mom gets a cup of coffee (caffeine:)), Elijah gets his oral meds. and mouth care, and I give Elijah a bath and make his bed.
We had a really nice afternoon. Elijah perked up for a few hours, and we painted. I should say Elijah had a blast squirting the paint out of the tubes, but he had no interest in using his paintbrush. I have a beautiful piece of artwork that he keeps asking me to put on his door (he was too cute about it!), but I keep telling him it will take a while (more like the minimum of a week:)) to dry for me to be able to hang it up. He even made one for the doctor while she was in for her afternoon rounds. She put it up in her office, adn told Elijah he needed to come see it hanging up when he was feeling better.
Elijah got a neat surprise today. Two gentlemen who sing together for sick children(Hugworks based out of Texas) came in to sing for him. Elijah chose Old McDonald (surprise, surprise!). I wish all of you could have seen his face as they sang! I love his dimples!
April 26th, 2006 Tonight was a little rough for Elijah. His stomach has been bothering him more and more. He started throwing up a little bit of blood so we now know he has developed mucositis (sores along the GI tract from chemo). He will be put on a pain pump. He is such a little trooper! Despite the pain he is in, he just says "My tummy doesn't feel good".
Dr. Grupp warned us that this would most likely happen although we were hoping it wouldn't. We thank the Lord for minimizing the pain and for quickly healing his GI tract. Thank you for specifically lifting this matter up in your prayers for our little guy.
April 28th, 2006
Today Elijah and I were so looking forward to Alfred, Abby and "Tap" (Pap) coming to visit us for the weekend! Elijah continued to run a fever through the night, but he slept soundly. The only time he would wake up was to throw up, which can be quite often at times.
When he woke up, I tried to get him to sit up and play with some of his toys. He just wanted to lay down. He really wasn't feeling good. Today was the first day that he started acting cranky with me and the nurse. He looked so sick, and I wished there was something I could do to ease his discomfort.
I wish I had had the video camera out because when Alfred walked through the door, Elijah bolted right up! (Then he threw up big time) He was sooooo happy to see him!!!! He just lit up like a light bulb! He "painted" with Abby. It was more like Abby painted, and Elijah was there for support:). He was too weak, so he had to lay back down. But he enjoyed "his Abby" being with him.
From about 3 o'clock on Elijah just laid in bed. His sodium was low so they gave him lasix twice to help bring his level up. He also received his first blood transfusion.
April 29th, 2006 Today is Day +4. The nurse said we have about another 7-10 days before Elijah's counts will start to come back. Once his counts start to come back, his mucositis will start healing.
Elijah spiked another high fever last night. This morning he had the chills, but he looks so much better than yesterday! He has even started drinking. The nurse is surprised because most kids aren't drinking at this point during transplant. Of all things he is drinking apple juice. It makes him throw up even worse, but the perk is that it helps him get alot of the mucous up more easily. I told him I didn't want him to drink the apple juice because it was upsetting his stomach, but I gave in because he gave me this pitiful, defeated look and said, "but I wike it mamma, I wike apple juice."
Elijah slept most of the afternoon--a benadryl nap. He is still so very nauseous so he is still getting pre-meds around the clock. He also got platelets again today.
When he woke up from his nap he was in terrible pain. His mouth sores have gotten worse, and his mouth is so swollen! The Dr. increased his PCA this morning, but she said we still may need to increase it. His mouth care seems to hurt him much more now so we may need to increase his PCA again tomorrow.
He wanted to see "his Abby" after he woke up, and we took a picture of them together (Alfred will be posting the new pictures in a few days). Elijah tried his best to smile, but his mouth is so swollen that he can't really smile:) Right now he is spending time with daddy and "tap", and he is quite the chatter box!
