July 2nd, 2006
Yesterday proved to be a rather tough day for Elijah. In fact, he did not even respond when Alfred and my dad arrived. He ran a fever off and on all day, and he had horrendous diarrhea. He kept throwing up, and he would cry from the pain in his stomach. I was extremely worried because he had not improved over the past few days. The doctors were also concerned. He was feverish, had a fast heart rate and just did not look so hot. Nothing alarming. We have been so blessed that he has not had any "complications". I cannot even begin to imagine it being worse than it already is. He just seems to be taking longer to recover this time around.
He continues to sleep sitting up. I hate it because it reminds me of when this all started. I wonder what he is thinking. He also sits indian-style, hunched over with his face in his hands. It is heart-breaking to see. He just does not feel good.
They increased his PCA yesterday to see if it would help him to be more comfortable. It seems to have helped to some degree. The doctors on service this weekend have been so compassionate to him. He is still on IV nutrition because he is still not drinking let alone eating. He is also continuing to spit his saliva out. I have tried to encourage him to drink, but he wants no part of it.
His teeth are stained an orangey-yellow from all of the bile he has thrown up. Even though the treatment he is on can cause problems with his teeth, his teeth still looked so beautifully white before this transplant. I hope his permanent ones are not affected. He has the sweetest smile:) I have not seen much of it this past month.
My prayer is that when we get to go home he will be the Elijah we know. Sometimes I think his spirits are down even though I try to make it as cheerful as possible for him. He has been through ssssssssssooooooooooooooooooooooooooooooooo much. All of the oncology children here have been. Most of the time I can kind of not dwell on it, but this time around it has gotten to me more. It is very difficult to not think about the fact that a lot of these children are not going to make it. My comfort and peace comes through praying for the families. Only the Lord is able to help to strengthen and encourage them.
I thank the Lord for his goodness to us. When Elijah was diagnosed, we were given a 34% chance of him making it. Can you imagine receiving such news? I remember how the Lord allowed me to find out in the most gentle way possible. He is so gentle and loving. If he had not intervened, I would have lost it, truly. By his miraculous intervention, my mom came down when I had told her not to; and Dr. Wald (his initial doctor [infectious disease] who had just gotten in from out of town had seen Elijah's name on the schedule for his MIBG scan, took the time to review his results and came directly to see me in the recovery room. She had run into my mom right after seeing the results. Look at God! His timing is perfect! My mom was there with me when I found out. I hated having to call Alfred with such news. If the Lord had not intervened, I would have found out a 7:30am the following morning by one of the attending physicians who pulled up a chair and matter of factly said this is what he has and this is what has to be done. God is so good!
Since then, Elijah has been of the small percentage of stage 4 high-risk neuroblastoma patients that went into remission before transplant, and now he has a 70% chance of making a full recovery! Hallelujah! What's more is that I can trust in the Lord who is always 100% faithful!
Today Elijah did a wee bit better. The doctor said she is not as concerned for Elijah as she was yesterday. She said that if his belly pain does not improve they will start to do some scans and x-rays so that they can find out what the problem is.
Elijah did not throw up as much, and he stayed awake longer so that is improvement. He did not play today, but he did paint one picture:)
They gave him extra calcium in his nutrition tonight because his level was low. I'm not sure if they will take him off of it tomorrow or not. I wish he would just try to take a sip.
I talked to Abby today. MeMe and Pap are wearing her out:)! They went to a Pirate's game last night, church this morning, a birthday party this afternoon, and they were going to the Clair's for dinner and swimming. What a blessing that Abby has been able to spend time with their daughter Jessica. Abby likes her sooo much! She always has a great time with her. Tomorrow Abby and MeMe are going shopping at Pittsburgh Mills. MeMe is very brave:)
I also received an e-mail from Michelle at Circut City. They have been working soooo hard on the Heart of the City Concert benefit for Elijah. It is going to be a wonderful day! We will be posting more information on his site, but for now it will be on Sunday, July 23rd from 12pm-9pm at Lorain Borough Park (right by our house). There are several bands, door prizes, games for the kids, refreshments, and Starbucks is setting up a booth. They are donating all proceeds to Elijah's fund!!! There is only a $5 cover charge for the entire event. If you are able to come, we would greatly appreciate your support:)
July 3rd, 2006
Today Elijah has done a complete 360 turn-around!!! This is an answer to prayer!!! He woke up at 8:30am. His HGB was low so he received blood. No fever. He is throwing up a little less. Diarrhea is less frequent, yet still a force to be recond with:) It is like opening the gates to a damn, truly:)
He started off a bit slow, but once he warmed up there has been no stopping him! He has talked a mile a minute all day!!! He has even taken a few sips of liquid!!! He also visited the playroom twice!
I have to believe his favorite thing today was "playing fish" with daddy. Elijah made a long rod out of thermometer covers (about 3 feet to be exact), and Alfred made paper fish that had been hole-punched. Elijah was tickled pink! He thought it was the funnest game! Alfred sat on the floor (pond) while Elijah dipped his "rod" and placed the fish on the pole then tugged on it to emulate a fish "biting":)
Elijah had to have his dressing changed today:( He was so pitiful. He cried and kept telling the nurse, "pwease no do dat, pwease no do dat, pwease no hurt me!" After he was done tears still in his eyes, nose running and chest heaving he said, "I no crying no more."
I am so grateful for this turnaround! I was worrying a bit. Dr. Bunnin said his progress in healing (or lack thereof) is often seen. The stomach is the last thing to heal, and it is a painful, lengthy process. Nothing to worry about.
The doctors checked on him three times today. He is now off of nutrition, and they started weaning off the pain medicine again. They said they anticipate him going home around Thursday or Friday. If he keeps up his current progress, I believe we will be going home Thursday. I am soooo glad Alfred and my dad are here because I can surely use the help and company:)
July 5th, 2006
We had an okay 4th of July considering we were in the hospital:) Elijah got to make a patriotic t-shirt. He didn't go to bed until 3:30am the night before so he was pretty tired. He drank 21/2 ounces yesterday and about 5 ounces today so he is moving in the right direction. He woke up this morning at 5:30am. Needless to say I was not ready myself, but gotta do what ya gotta do:) He took a long nap this afternoon to make up for his early rising this morning:)
He is doing much better. Talking and wanting to play more. He keeps informing us that he needs to go home:) His stomach is still really hurting him pretty badly. He is now on Prevacid to help with the pain. It is just so hard to get it into him!
He is not feeling the best because of his stomach. He still hunches over and puts his face in his hands when it gets really bad. A lot of the time Alfred and I will rub his tummy to help him relax.
We have 1 1/2 days till we go home!!! We are all more than ready!!! Elijah and I have been here 26 days, but it seems longer than that. I just thank the Lord for the wonderful care we have received everday we have been here! What a comfort and blessing!
July 7th, 2006
Day +23. We're going HOME!!!!!!!! We are soooooo excited!!!!! After 28 days we are going home!!! Elijah just needs to get platelets this morning, and we can leave.
We thank the Lord for being with us every minute of everyday. We are so thankful for the very special doctors and nurses who gave Elijah excellent compassionate care during our stay. We are truly blessed!
July 9th, 2006
We arrived home around 4:30pm on Friday. The trip home was tough for Elijah. He wanted me to hold him, and obviously I could not. He has not shown much enthusiasm about being home yet. He is still not feeling well at all. He is not drinking enough, and his belly is still really hurting him. He wants me to hold him all of the time, and he just looks so pitiful. He wants to eat. He tells me, "I need to." But he doesn't want anything we offer him. In the past three days he has eaten one half-dollar sized pancake and three itsy bites of steak. I hope this passes soon.
The only time he perked up was when Abby came home on Saturday. We were sooooooooooo happy to be home together for the first time in over a month! Abby spent a greater part of today preparing brunch for us:)
Elijah has a clinic apt. in Pgh. on Wed. this week and another one in Phili on Tues. of next week. Thank you for continuing to lift him up in your prayers!
July 13th, 2006
It has been a very busy first week home for us. Elijah continues to have a much more difficult time recovering from his second transplant. Monday night we had to take him to the ER at Children's Hospital of Pittsburgh for dehydration. They admitted him overnight. Tuesday they gave him some potassium and platelets because both were low. I was so thankful that they sent us home with Elijah getting IV fluids overnight for the next week. Can you believe we were in the exact same room we spent all of those miserable first weeks in?! At first it didn't hit me as to why my heart was racing when they took us to our room, and then all of a sudden it became clear! I hated having to stay in that room, but the oncology dept. was full. The Lord has brought us a long way:)!
Today is Thursday, and Elijah is still not drinking enough. The only reason he has wet diapers is from the fluids he receives at night which are only half of the maintenance fluids he needs. He cries so much about being hungry, but he cannot seem to find anything he can eat. He is not throwing up as much so that is a blessing, but his stomach has not started getting any better.
Tomorrow I have to take him to get platelets. I asked Pittsburgh's clinic if he could get them at Memorial Medical Center because he is just so miserable, and the trip is so long for him. Pittsburgh set it up so we will see how it works out. I am surprised at how his counts dropped this week. He is neutropenic again. His ANC is down to 674. We will see what Dr. Grupp says on Tuesday.
July 19th, 2006
Things have been so busy that I am not able to update as much as I would like. Elijah is really starting to get better. He is starting to act like himself. He is just so funny! He is eating more, but we still need him to drink more! His clinc appointment with Dr. Grupp went well. His counts were stable. They will be checked again at the end of the week to see if they are holding on their own or if it is from the transfusion.
If they are holding on their own, then Elijah will be scheduled for the six days of site- specific radiation. If not we will hold off. Alyssa, a two year old little girl who is also being treated for neuroblastoma and who is only about a month ahead of Elijah in treatment is still waiting for her counts to hold on their own. She is eating good, but her mom, Dana, said she is having a hard time getting her to drink as well. I wonder why that is. She is such a cutie!!! We got a picture of them together during Elijah's second transplant. We still have not yet posted those pictures, but there are some real precious ones:)
The night-time IV's really helped to perk Elijah up. But he is glad that he isn't hooked up anymore. He is much more active, and he is laughing so much more. I just love to hear him laugh. i have not been able to get very much done since we have come home because he is still wanting me with him all the time. He is my little shadow:)
Abby made us a delicious breakfast this morning of pancakes, french toast, hashbrowns and sauteed mushrooms:) Elijah enjoyed the french toast. I then spent the next hour cleaning our kitchen:) She is an excellent cook!
I will update soon...
July 28th, 2006
It has been a while since I've updated. Elijah continues to grow stronger and stronger. He is acting so much more like himself:) He is finally saying, "I so happy I know I home!" His last two clinic visits have gone very well. His counts look like they are recovering on their own so we will schedule his site-specific radiation, and Elijah will now start taking Bactrim again. He is eating like a little piggy and drinking like a champ! This gives us such a peace of mind!
We had a wonderful day on Sunday at Elijah's benefit!!! We just wish he could have been their to see how many people care about him. The weather was beautiful, and the EEC committee from Circut City put together a wonderful event! All of the groups that performed were so good! Broken Spoke even put together a gift bag for Elijah. You should have seen his face when he saw the picture of the band with their cowboy hats on:)!!!
We appreciate Giant Eagle who made the most generous donation of hot dogs, hamburgers, buns and Lunchables for the fundraiser. I thought the committee from Circut City said it perfectly in the brochure they passed out at the event, "We definitely received an advantage when we contacted Giant Eagle!" So many other businesses gave donations to support the fundraiser.
How do you express gratitude for such generosity?! We continue to be so very blessed.
Since I last updated, Alfred and I have been so fortunate to meet a most beautiful family. The day Elijah's story was on the front page of our local paper, I received a phone call from a Mrs. Kristen Weaver. She was calling from Conemaugh Hospital where she and the rest of her family were by her mother's side as she went to be with the Lord. She had non-Hodgkin's lymphoma. In the midst of the most difficult time in their family's life, they were reaching out to our family! Their mother lived an especially beautiful and giving life. In her honor, they asked that all gifts to the family be donated to Elijah's fund. Alfred and I were astounded! This family has been such blessing from the Lord. We were so fortunate to actually meet Kristen, her husband Kevin, her brother Bryan, his girlfriend Marissa, and their father and Kathy's husband of 37 years Francis. They took the time to come meet us! I can't imagine how difficult it was for them to come, but they wanted to meet Elijah. It is has been our pleasure to meet them. When Elijah is able to be around people we are going to have a cookout.
