It has been a long time but here is an Update-

Here is a long overdue update!! We had an extremely busy weekend—5 baseball games in 3 days in Indian Trail, a cookout with family and friends for Memorial Day, swimming at the pool, shopping for summer clothes and a warning ticket from a friendly police officer in Matthews!!! (My tag had expired—I was not speeding!) I am telling you this because we had a pretty normal week ☺

Last weeks test went OK—Grier did great— We thought he was going to be in some discomfort after the bone marrow test and he made it through with flying colors—he came home ate a doughnut and was ready to play—loves playing baseball while sitting in a chair-

Grier went to clinic on Tuesday to make sure his counts were OK to start the 3rd cycle of chemo—Everything looked good so we were admitted and chemo started around 3pm on Tuesday- This cycle is different from the previous rounds—it is two different types of chemo and it runs for about 3 hours total—we were concerned about the cisplatin because it seems to cause the most nausea and vomiting but so far he has been fine ☺

We also heard that the results from the CT scan—there has been shrinkage in the tumor ☺ Some areas like the abdominal area has shown a greater percentage than the lung area— It is still not small enough to remove surgically. But it is responding to the chemo—and I have to remember that this scan is after 2 cycles and we have 4 more to go- The bone marrow test came back “clean”—no neuroblastoma cells were found in the bone marrow—This was great news for us to hear-

This cycle is four days instead of the three so our hope is to go home by Saturday. Chemo will end Friday but with cisplatin you have to give a lot of fluids after to flush out the kidneys to avoid damage—He is ready to go and is waiting for the medicine to end—This is a good sign since he thinks it is normal to be at home and not at CMC☺

All the tests are over-

Grier made it through both days of testing with anesthesia really well-- Now we are just waiting for results. We will go to CMC on Tuesday to start round 3-- Have a great Holiday weekend-

A big week ahead!

Grier will go to the clinic tomorrow ( Wednesday) to get his counts checked-- and then he will go downstairs for a CT scan- after that he will go to recovery and then we can go home if all goes well- And then we will go back on Friday do the same at the clinic and he will have a bone marrow LP- he will go to recovery again and then go home- After these two results come back we will know about the date of round 3-
This will be a busy few days for all of us and especially Grier-- please continue to pray that he is not in any discomfort during and after these procedures-

NO clinic :)

We did not have to go to the clinic after all-- blood was drawn at home and then taken over to the clinic-- the results came back and he did not need platelets so we were able to stay home today--
If all goes well we will be home until Tuesday--

Home again and this time it is a THURSDAY!!!

We are home!! Grier is doing well and taking a ton of medication-- We had a choice to stay tonight @ CMC and do some antibiotics tomorrow morning and a scan or go home with the possibility of coming back-- well-- We live too close not to choose home! At least we all will be sleeping in our own beds tonight ( except Grier--he seems to like my bed!) We will plan on doing a scan early next week as outpatient- and possibly start round 3 by next weekend--
He walked today and actually stood up by himself-- I think he is so much stronger and is not quite as scared-
We may go to the clinic tomorrow for more platelets-- if we do please say a prayer he does not get a fever after they are finished-- That would put us back in for a few days-- we know that drill all to well:)

Thanks for all the notes and visitors lately-- they made the time at CMC go by quickly-

Another test result!

The test came back and he has a hard type of bacteria to treat in his line-- so the weird part is he should look and act sicker -- he does not have a fever and his counts are increasing each day-- so they took another culture just in case-- The only option is to surgically replace the line/port-- We may go home on Thursday and wait the 5 days at home and hopefully nothing will grow out during that time-

Still @ CMC

We are still in the hospital-- we are waiting on a lab tests that came up positive for gram neg in his lumen and then they can narrow down what type of antibiotic to give him-- he was on 3 IV antibiotics and 2 oral but we have dropped one of the IV antibiotics-- so we are just waiting! He got another platelet transfusion today and spiked a fever this afternoon-- He is having a horrible time with a diaper rash -- this is caused by c-dif, which he tested positive for on Monday-- needless to say there is a lot going on but he is feeling well and talking to nurses, bowling, watching movies, and listening to a new CD ( Roger Day!) He did crawl on the bed and tries to stand up to look in the mirror-- I am glad he is using his legs!!

Hopefully we will be out soon-- and we will know the date of the scan and round 3!!

A long day!

We had a clinic appointment today at 10 -- Grier ended up needing platelet and hemoglobin transfusions-- he had a reaction to IV benadryl -- he was inconsolable for about 40 minutes-- and around 4:30 while he was napping he started to feel warm-- I was hoping it was because he had been sleeping on me since 3:00-- but just to be sure we were admitted around 5:30-- we went through the same drill-- chest x-rays, blood cultures and now we just wait it out 3 days-
He still has a fever tonight so I am glad we got to the tower around 6pm instead of coming home and going in the middle of the night-- The more I read about Neuroblastoma the less days like today surprise me-- it seems to be par for the course!

On a brighter note-- Hayes hit a homerun ( his first out of the park!!) last night-- you can see a picture of him on www.dyaa.net!!

Wednesday-

We just got back from a clinic appointment and all went well-- he looks really good and feels really good-- They took blood and then sent it off while we waited-- Dr. L came in and thought he looked great and was pleased that he was eating-- He left to go get the CBC results and his white blood cell count was .1!! We were both a little shocked that he is feeling that well-- considering last time-- he hemoglobin count was good too-- We have to go back on Friday to check again and see if we need to get platelets before the weekend-

Pat came to visit today and kept asking Grier to walk-- he would just smile and say "I can walk" and Pat wanted him to show her-- well, he did!! He took a few steps to her and then back to me-- She also told him about the Children's celebration at church in June and he is very excited about that-- I think he thinks it is this afternoon!!

Check out the www.gogriergo.com site-- there are new pictures under Community Support!!

ball games, and preschool @ home-- A full weekend!

We had a great weekend-- we were very busy with visitors, baseball, closet cleaning, soccer and vet visits for Tucker!!

Mrs. Leary came by this morning and made Grier's day-- we had a little preschool at our house! She brought a craft to make for Mother's Day ( Grace and Grier made it together after she left) and she brought a book on tape that he liked to listen to at school- he wanted to listen to that right away-- And she got to see the video of the class--

I learned a few nursing techniques this weekend from our home health nurse!! I made Grace, Hayes, and Grier laugh at my first attempt to get rid of an air bubble in the saline syringe--- I sprayed water in the air and got us wet!! After the quick shower I flushed the line and hooked it up to the pump that controls his TPN---

We go to the clinic on Wednesday and I am looking forward to that to see where we are with his counts--

Thanks again to everyone who is helping us-- especially with Tucker this week ( Anne & Susanne!!!)-- he looks and smells great-- we love his new haircut and so does my vaccuum! And his quick check up by Dr. Jimmy helped us so much--

Another Friday Discharge!!! We are home again-

Well- It is Friday and we have been discharged again!! I am not complaining -- it seems to be our new Friday rountine-
He did great today. We woke up early and started watching his class video-- I would say we watched the 11 minute video at least 30 times today-- every nurse that came in saw it as well as any visitor-- When Dr. L came in he saw it too!!! Grier was waving to the TV at the end of the video when all his friends are waving good bye-- It is really sweet to watch-- I did ask Dr. L if we could visit his friends when his counts go back up and he said yes!!!
He is eating really well-- he is also still getting TPN so any extra food he eats is just extra calories!!
He is playing with Grace right now as my mom and Anne and I are unpacking-- it is really nice to be home--
Thanks for all your prayers -- they are working!!

It was a pleasant Thursday!!

Grier is doing well—no fever and he is eating and sleeping!! We finish chemo tomorrow morning around 9am— It is amazing how well he sleeps through the constant noise in the hospital as well as the poking, beeping and changing diapers in the middle of the night-- Dr.L says he is doing well with this round—
One of the highlights of the day was watching a video of his class having music time!!! It was so cute and he was grinning the whole time—

We are off and running with round 2!

Tuesday, May 1st— and early Wednesday, May 2, 2007

Chemo started around 10am – and Grier was still in his good mood—He stayed with my Mom and Jeff’s parents while I went and ate lunch with Hayes and Grace at school—Anne and Mac went with me too! After lunch we came back and a picnic was waiting for us. Grier was shooting baskets, and playing with Pat and Buddy (dog puppet that only speaks to Ms. Pat)—I will let Pat explain Buddy—I did not know who he was but as soon as Grace came in she said oh- that’s Buddy! He has a new “cars” TV tray that he loves to eat on as well as color and play crazy eights-- He is still entertaining nurses we had when we first were admitted—they come to hear him talk since he did not say a word for 20+ days--- Grier had a piece of pizza for dinner and ate it while Dr. L talked to us for a good hour—I think he is entertained by Grier too—he left wearing a Go Grier Go hat!! --- We all went downstairs for dinner after a few games of Hide and seek with Grier—Anne taped it and showed the video to Grier and he said “ hey! I have a new haircut~~~” We all laughed because I guess he did not remember when Ross showed him the mirror after we were done buzzing his hair-

The nights have been different—he is not sleeping as well and early Wednesday morning he spiked a fever— but other than that everything seems fine—we will do a scan in about 3 weeks to see how much the tumor has shrunk—

I did find out the Neuroblastoma research funding is far less that other types of cancer—so hopefully through this experience we all can change that!!