We have some news-

Grier went to clinic today to have his counts checked-- And they were good-- finally after 20 days of IV neupogen we can stop! Dr. Longee has looked at the scans and read the reports from the MIBG and it shows that the large mass is still active neublastoma cells- But the good news is there is no signs of new tumors right now, the only thing that lit up was the mass-- Now it is more compact than it was in the beginning-- it does not have that pancake shape. He does not think the next round of chemo will do anything to the mass and we need to find a surgeon who can remove this tumor-- Calls are in to Doctors at Duke, UNC, and Memorial Sloan Kettering Cancer Center, so hopefully by next week Jeff, Dr. Longee and I can decide where we are going to remove this tumor-
I am a little dissapointed-- I wanted this mass to not light up at all and be dead cancer cells but knowing that there are no new tumors right now is comforting- We have a really good doctor here and he is treating this case as if Grier was his child- And I can not ask for more-- He is looking for a 5 star surgeon that is going to remove this tumor- We may possibly do radiation but right now it just depends on where we go next for treatment-

On a different note, school has gone well for Hayes and Grace this week-- both are enjoying thier classes-- It has been a little tough to get everything done but I am gradually getting back into the swing of things-- baseball has started and soccer should start soon-- and then we will be busy-- Grier keeps asking when his "cool" starts-- He sees everyone else going and really wants to go too-- His teacher from last year came to visit and that seemed to help-- and he has watched a video of his class singing from last year and loves to show me all his friends--

Thanks to everyone for all the emails, calls, meals, walks and EVERYTHING else this week-- Have a great labor day weekend--
Amy

We are done!

Today went much better-- we did not arrive until 11:30 and we were home by 3:00-- They said we did not have to come back tomorrow-- so we have a day off from CMC! Grier's counts are still low--.2 so we are home staying away from crowds-
Hopefully we will have good news to share next week--
This will be a busy weekend preparing for the first day of school--lots of papers to fill out--:)

Hurry Up... AND wait!

Today we left in a hurry for CMC because nuclear medicine called @ 9:00am to say anesthesia could take Grier at 10:00-- instead of 12:00! I jumped on the chance to get home quicker since Grier woke up asking to eat! We arrived at CMC @ 9:30-- checked in and the wait started--- Jeff drove from work early and I knew when 10 :00 passed we were in trouble-- Long story short-- we were told 20 more minutes all day!! And I asked Jeff if it had been 20 minutes yet and he commented about 4 times!
Well-- about 12:30 the CRNA (Caroline) came to tell us they were ready for Grier and everything else went fine-- we have had her a few times for other procedures so it helps to know a familiar face and not have to go into the story each time-
We got home @ 3:30 and Grier is playing and having a good time-- We will go back tomorrow @ 11:30-- not one second earlier and do the same scan again- I hope it is the right time because there have been several different times told to us-- but Caroline checked for us about anesthesia and she has 12:00-- So that is what we are going with since the scan can not be done without them! We also have to get labs drawn before 11:30-- so another busy day!

Still no word on last Fridays CT scan-- lately we just do the scans and wait and wait for some piece of information!

Day 1 of MIBG

Today was LONG!!! Grier and I left around 8:30am and got home around 5:30-- Needless to say we are both tired--
We had to go to clinic for a type and cross for blood-- before the 9:30 appt.-

After WAITING forever ( the took us back at 10:30)--The first part of the MIBG was drinking a TINY bit of liquid-- I was worried about him getting it down but when we mixed it with juice it was not even a teaspoon! This took about 5 seconds! This medicine protects his thyroid. Then we had to wait an hour-- we went outside and looked at the ducks on the greenway-- After the hour, we went back to nuclear medicine and WAITED--- finally they took us back for an injection in his port-- it took about 2 seconds! And then we went back to clinic and he got a blood transfusion and a platelet transfusion-- Whew-- That was a LONG day- I bet you can tell that I was not too happy about all the waiting!!! We would have been home earlier if nuclear medicine could have been more efficient-- and we would not have had to wait in a lovely waiting room when he is .1 for his white blood count & -- no immune system!

Tomorrow- he will have to drink the medicine again an hour before we go to CMC-- then he will have anesthesia and they will do the scan-- it should take a few hours-- we will go to recovery and then go home- We will find out tomorrow if we go back on Thursday to do it again- and they said today that it could be possibly Friday too-- that was the first I heard that--

As always-- check out my hopebuilders page-- and if you want to donate to Levine Children's Hospital-- you can sponsor me !!! 100% of all money raised goes to LCH!

www.register.hopebuilders5k.org/goto/Amy.Christenbury

It has been awhile since I updated!

I can not believe it has been almost a week since I updated this blog!!!
This week was very busy-- Sunday I gave blood for the first time ( AND without fainting!!!) Thanks to Derann I did not chicken out!! Monday Kidspath ( home nurse) came and did a CBC-- his counts were really good so they cancelled the appointment for Wednesday and told us to come in Thursday instead! Wednesday we went out of the house for awhile --- :) Thursday we went to clinic and found out his counts were at zero!! That was a shock since they were so high earlier in the week---- They wanted us to come back on Friday am to check platelets because he thought he would need some--

Well-- Today we went to clinic at 7:45AM!!! They drew blood and then we raced downstairs for the 8:00am CT scan appointment!! He had the scan and was in recovery by 11:30 and our favorite recovery room nurse was waiting for Grier!! After recovery we had to go back to clinic for a platelet transfusion-- They were right! So, Susan walked us to the clinic ( which is in the opposite end of the hospital!) We got home today around 2:45 -- Needless to say it was a LONG day for all!! He was back in the front yard tonight hitting baseballs-- or "homeruns" as he says~

Hopefully we will make it through this weekend fever free - Next week is another crazy week full of appointments-- clinic ( probably for a blood transfusion) and then Tuesday, Wednesday, and Thursday he will have a nuclear scan called MIBG- This scan will light up active neuroblastoma cells-- We are told that sometimes on CT scans you can not tell the difference between scar tissue and tumor-- so this will give us more answers-

Thanks to EVERYONE who has sponsored me and my team for the Hopebuilders 5K walk that benefits Levine Children's Hospital!! If you would like to do this here is a link -- www.register.hopebuilders5k.org/goto/Amy.Christenbury

Grier has finished 5 rounds of Chemo!!

We got home on Saturday and Grier is up and going again!!! He started getting sick Friday morning and chemo would not have ended until late so we decided it was best to stay and leave Saturday morning. Our stay was great except that we lost "panda" on Friday when we got new bed linens on his bed. But thanks to EBAY ( I know some of ya'll are laughing:) ) we have a new one coming in the mail!!! Panda has been with Grier since Day 1 in the hospital so we had to find a new one!!

Now that we are home, we will start all the medicines by IV at home and hope to keep the nausea away-- He will have a busy week ... home nurse visits for CBC counts on Monday, clinic visit on Wednesday and another CT scan with anesthesia on Friday.

As for Grace, Hayes, Jeff and I we are hanging in there.. Jeff and I are recovering from sleeping at the hospital (or really watching Grier sleep!!) and Hayes and Grace are excited to have everyone under one roof again--

Friends and I have formed a team to walk in the Hopebuilders 5K. Each of us have had children who have had long stays at the hospital so we are honoring Charlie, Jack, Clayton and Grier. I have been working on my page to honor Grier on this walk. If you want to see it look here http://www.register.hopebuilders5k.org/goto/Amy.Christenbury It is still a work in progress!! Feel free to walk with us in October.

That is it for now-- Thanks for all the help last week and a BIG thanks to John Williams at Barclay Downs!!!! Remember if you want to donate blood tomorrow check out an earlier post for the details-- I am planning on going for the first time!!

All is well--so far!

Grier has really done well-- he has been a little more tired than usual but that is it!
He had a lot of visitors today-- you can see him on the news 14 channel on cable at 24 past each hour being visited by some of the Charlotte Knights-- That was fun for him-- Pat, Hayes, my mom, and I were there too-- he showed them how he could use his teddy bear as a bat and hit a panda bear!! Very Impressive!!
Hopefully we will be home tomorrow night-- he will not finish until 7pm-- And since we live so close we may go home--

Quick Update

Grier started chemo yesterday around 3pm-- the first dose was done in 2 hours (checking blood pressure every 15 minutes) and then he was given some meds and the 2nd dose.. cisplatin started-- it runs for an hour and then he gets lots of fluid to flush it through his system-- it can damage kidneys-- After that his diaper needed to be changed every two hours to make sure he was OK--- this went on until 7am!-- The best part of yesterday was being able to walk upstairs to the 8th floor and see our new neighbor!!! Everyone was excited to see Leah and David's new baby since we were at CMC it was very easy for us to keep visiting during the day!

He took a long nap today after a pretty busy morning of painting (we have hung his pictures all over the room), and playing concentration with Nurse Judy!!-- I was glad since he was getting a blood transfusion during his nap and sleeping through it is easier for me-- he does not get tangled in his lines as much!! And we do not have the beeping from the pumps!! After the transfusion finished he started the same chemo routine as yesterday-- He is doing well-- today he is a lot quieter than yesterday and he has lost his appetite-- He wants Chinese for dinner so we will see how that goes over!! Grace has been busy at tennis camp this week-- yes! the hottest week of the summer!!! And Hayes has spent lots of time with his friend Henry-- :) We finally found out that the second bone marrow test was clean-- that is what the doctor expected but it was good to know for sure-- Other than that we will have more tests in the coming weeks to see where we are in the battle to get rid of cancer!

CT results

Jeff, Grier and I went to clinic yesterday and met with Dr. Longee-- He had some results for us-- there has been some more shrinkage of the tumor-- most importantly it looks like it is shrinking away from the lungs-( This is important from a surgical stand point-- he is not having breathing problems) There is still a mass in his abdomen. There is still no results from the bone marrow test.

Our next step will be to consult with several doctors-- of course the pediatric surgeon here in Charlotte who appeared in our room the first days of diagnoses. He has seen the tumor since he did the exploratory biopsy.-- And we will consult with Duke and UNC too-- Dr. Longee is helping us find the best place for the second phase to take place-- We are considering everything-- being close to home, expertise in tumor retraction, consistency in care when and if we do stem cell harvesting, and of course a doctor who is a blue cross blue shield provider-- ( The only 3 pediatric surgeons in Charlotte are not!)

Grier will start round 5 on Tuesday-- we will have 4 days of intense chemo and hopefully be ready for a late Friday discharge-- Cisplatin is the chemo that gave Grier the hardest time with vomiting during treatment and LONG after we were done getting the medicine and it is also the one that can damage hearing.

This week has been a little normal-- pool time, bike riding, walks at Freedom Park ( NO, we did not run into the ball python that was on the news!!), and getting ready for school-- school supplies and forms to fill out!! It felt good to fill preschool forms out for Grier even though I have no idea when he will get to go-- But I know he is ready-- he is talking about going to school a lot--!

Have a great weekend and I will update from the tower next week!!

Blood Drive at Covenant and still no results!

We still have not heard any results from the CT scan-- Grier goes to clinic tomorrow for a CBC and most likely will get a blood transfusion. He was very low on Monday and I was told to be prepared to stay awhile on Thursday. Also his WBC was very low so I am not sure when Round 5 will start-- Hopefully a lot of questions will be answered at clinic tomorrow-

We are asked all the time how people can help Grier-- Well, other than prayers for him and prayers for his doctors to make good decisions.... I would suggest donating blood-- Please see below for information-- Grier has been lucky to have blood and blood products available to him everytime he needed it--

Want to help???? Come to Covenant on August 12th and donate blood-- Grier has had numerous blood transfusions and platelet transfusions in the last few months. To make sure there is enough blood we encourage you to donate if you can. You are giving the gift of Life and you never know when a friend or loved one will need it-

Red Cross Bloodmobile
Sunday, August 12, 2007
Fellowship Hall @ Covenant Presbyterian Church, Charlotte , NC
8:00 a.m. – 12:30 pm

If you are healthy and can donate a pint of blood Sunday, August 12 please call Nora Kuester (704-365-1172) or Judy White (704-804-7561) and make that life giving donation of your life’s blood.