New Path...

Looks like we are headed to Philly... After gathering the needed information and talking to CHOP (Children's Hospital of Philadelphia) we have decided to go and see what they have to offer Grier in terms of treatment.  I have read a lot about a few trials they have and I am very interested in hearing what the doctor thinks in terms of Grier's case. The good news is we have an appointment for Wednesday, May 4th.  The bad news is that is NEXT week and once again the airline and travel part of this journey is OUTRAGEOUS. I just thought NYC flights were expensive! But I am not worried about it now... I need to hear what they have to say and hopefully there is something out there besides the same old chemo. One trial that I am hopeful Grier will benefit from is MIBG therapy.  I have added a link to explain it.... http://www.research.chop.edu/programs/maris/docs/mibg4.pdf

Grier does not know yet that we are going to Philly.... but we are going to have Jeff with us this time so it should help since we are going to a new hospital.  We have not had his company in a VERY long time so it will be nice to have another adult with me. Our appointment is just going to be one day and then we will come home and see what they think. Since it will be one night we are staying at a hotel that the hospital suggested... There is a Ronald there but I will be honest I did not want to worry about a room and all that entails for one night.  The best news I heard about the  Philly RMDH is that we do not have to bring sheets or  launder them before we leave and the room cleaning is not so rigorous. That has been wearing me out lately since I have been traveling solo to NYC for the last several months.  I have read a few care pages and  I am "excited" about this new opportunity~ as excited as you can be about this crappy card we have been dealt yet again.   We will still be going to MSK and CLT just adding a new piece of mail to our mailbox from CHOP... LOL!

I have been thinking about the "cure" that is so far out of reach... and I am leaning more towards finding a treatment for this 'chronic condition' with a good quality of life.  NB relapse does not have a cure but I do believe that we can treat it for a very long time and hopefully that is the direction we are headed.  

Watch out Phillies... you are getting ready to have a new FAN named Grier!!! Here we come CHOP!

Wed, Apr 27, 2011 7:40 PM
The first part of this week has gone so smoothly I have almost forgotten about the last month of chemotherapy, a 9 day hospital stay, and a trip to NYC for scans... It is amazing how well Grier adjusts back into his routine that has been interrupted since he was 3-- he really surprised me by going to school the last three days and staying all day. He not only stayed all day but has played all afternoon as soon as he has gotten off the bus. He has told me a few things that were said about his "bald head" but he does not seem to let it bother him.... Some would say because he is a boy and it would be different if he was a girl...but bald is bald.. It is hard to lose your hair once but he is on his 4th time! I have tried to get him to wear a hat and he doesn't want to... I wish I was that brave!

After a few days of emailing.. We are a little closer to our next step. We need to start a low dose regimen of chemotherapy similar to the one he had last month but at a much lower dose. After chemotherapy we will need to harvest some of his stem cells for our just in case scenario.. Hopefully this harvesting can be done in Charlotte.. All of this depends on when our appointment at CHOP ( childrens hospital of philadelphia) is scheduled... Scans have been sent to them as well as Grier's clinical history... And insurance said OK! We are just trying to get a second opinion ... Who knows if there is anything that we will be able to do but it is time to find out.
I am anxious to hear what they say ... The biggest question I have been asked is " Do the doctors not recommend a plan ?" well, there is not a roadmap that we are following now.. We haven't followed a "plan" for awhile because there is no set plan for relapsed NB... and we are relapse x3 so it is an individual plan for Grier! NOT ideal... And since I not an MD I feel very lost at times... But by no means are we done trying to find the right treatment for him... He continues to show us how to LIVE life to the fullest with NB so we will Continue to fight the fight so he can be Grier!

In New York, 

Concrete jungle where dreams are made of, 

There's nothing you can't do, 

Now you're in New York, 

These streets will make you feel brand new, 

The lights will inspire you, 

Let's hear it for New York, New York, New York ~ Alicia Keys

Our New York trip with Grace went very well... She was such fun to have with us and hung in for all the walking we did around the city. I think she really loved being in the big city.  I heard Grier say to her, "Gracie, I am glad you came with us"- so that is all I really needed.  We had a delay on Tuesday so we got to NYC a little later than I had hoped... As soon as we landed we got in the cab and headed to the Ronald. We checked in..dropped our bags in the room and left to get a late lunch at Lenny's.  After lunch we had to make a quick stop at the hospital to pick up some medicine... As soon as Grace walked into the 9th floor.. she said, "WOW"~ the glass playroom in the center and the aquarium are nice! She got to meet some of Grier's nurses while we waited for our meds.  After we left we headed out to walk the city... it was raining and chilly and I of course did not check the weather! Grace packed a raincoat but Grier and I were out of luck.  He was always covered in the stroller... so I was getting wet! Our first stop was Dylan's... Grace had heard about this candy store for years but had never experienced the SWEET CHAOS! It was really crowded... and that was the first sign that NYC was really busy this week because of Spring Break. Bloomingdales was our next stop..... and I got an umbrella! Grace was quite the shopper... spending her own money very wisely.... We then kept walking and headed towards Rockafeller Center.... the lego store was there!  We stopped for photos in front of the ice rink... and radio city music hall.  We tried to go into the NBC studio store and it was then we realized it was almost 8pm!  It was still spitting rain a little.. so we caught a cab and headed to dinner at "sudden hospitality" -- actually Southern Hospitality.... Grier wanted to take Grace there so she could share some BBQ chicken nachos! After dinner we walked back to the Ronald... unpacked and made our beds and fell asleep around 10:30- 

Wednesday morning came quickly... we had to be at the hopsital by 8 to get Grier's port accessed.  He had to drink his contrast by 7:30a.  He had no problem with that... I had to explain to Grace we don't do many breakfasts in NYC because Grier can't eat before some pictures... and she was good... We finally made it to CT a little late... and Grace waited right outside the room while I suited up in the lead vest to stand beside Grier~ 10 minutes later he was done with that picture and we headed for a bagel! We ended up walking the all the way to 86th and Madison... Grace wanted to go to the big Crewcuts store.. so we found that and Grier had to show her his favorite store, Lester's which was on the way!  Time was going so fast... we had to be at the hopsital again at 2:30--- and it was already 2 and we had not had lunch... so we walked backed and passed Shake Shack and we decided to stop.  I told them we had waited for the hospital a lot and it was OK if we were a little late!  We actually made it there and had to wait... we always wait so I was not too surprised! After Grier got his nuclear injection for his MIBG scan we left and headed to FAO, Apple, Central Park area... we walked 5th avenue... and then went to Times Square.  We had a nice quite late dinner at an italian restuarant and enjoyed visiting with Gretchen.  Grier fell asleep at the table!! We caught a cab back to the Ronald and again went to bed late... 

Thursday was supposed to be one scan at 9:20-- should have been done by 11... if all had gone according to our plan.  Grace decided to stay at the Ronald and watch a movie.. because she could not go in the scan with us and the waiting room is a main waiting room for everyone in nuclear med.  I went to the corner store and got her some breakfast... and Grier and I left for the hospital.  Around 10:30 they came out to tell us they were backed up-- and we could go somewhere -- and come back in 30mins!  So, we walked back and made sure Grace was OK... I know she was a little bummed when I said we had not even started the scan yet.  We left again and finally started the scan around noon.... amazingly it was one of the shorter scans... they did not want a spec CT so we did not have to change machines... which was good because Grier had fallen asleep.  When they were all done we went upstairs to have his port deaccssed.  I also asked if anyone wanted to see me before we left.  BIG MISTAKE..... we ended up waiting for almost 3 hours to talk to Dr. K -- poor Grace had been at the ronald for 6 hours and it was almost 3pm!  One thing on her list was lunch at a place she saw on the food network called s'mac... they only serve her favorite food.. mac n cheese.... we were going to cab there for lunch but never made it! We had to do a quick slice of pizza because we had plans to go to the Mets game that night.... 

We left for the subway around 5:30... walked to 77th/Lex with NO STROLLER... and caught the 6 train... we got off at Grand Central and switched to the 7 and headed towards Citifield.... The game was fun.. but it was super windy and freezing cold.  Again, not prepared clothing wise!  It was still heavy coat weather! At the 7th inning we headed back on the subway and arrived back at the Ronald late again.  

Friday was a slower day... Grace wanted to bring some cupcakes home so we walked to Crumbs... and came back and cleaning the room... packed the box up and before we knew it--- our ride to the airport was downstairs.... we landed in Charlotte at 5-- and I was exhausted... actually still am!  

I know everyone is wondering WHY I did not elaborate of the conversation with Dr. K-- that I waited almost 3 hours for!! Well, I don't know what to say... he asked me what I would like to do next??? And I was caught off-guard... I told him I was hoping for his guidance.  Grier's scan was not clear.  BUT is showed improvement and it had only been less than a month ago from the first day of chemo.  We have lots of phase 1 trials to consider... and phase 1 is exactly that... phase 1-- nothing proven! We are still waiting for the final report.  We also need to harvest more stem cells for a "rainy day emergency"- we have some stored in NYC but it would be nice to get more if we can.  The more chemo he gets his bone marrow will take longer and longer to recover... and he could get stem cell rescues to help him recover faster.  There are some things we are looking into at other hospitals. I wish there was a clear path but there is not... lots of things to weigh... there is a the new humanized antibody coming out soon... which Grier would be a good candidate for... but it is like the vaccine... not available now.. and we don't have an exact date.  We have to do something now. 

This week Grier is going to be able to go to school... play soccer.. and be the little boy he wants to be. He looks great except for the new hair style and feels ok.... his ankles hurt.. which is a side effect from one of the chemo agents he had. It does not stop him from trying to run.... but you can see that his run is a bit "old manish" 

I am hoping for some answers and guidance this week, for life to get a little easier, and as always for a miracle. I know that is a lot to ask... and considering our luck.... but I guess it does not hurt to ask!  The week went better than expected... we explored NYC like tourists... did our thing at the hospital... and crashed every night exhausted from the day... 

Re-entry

Our weekend was pretty uneventful... re-entry is a little hard to get used to after being in patient for over a week... Grier adjusted well.... on Friday night we went to dinner... he was thrilled to meet The Stacks at the Mellow Mushroom... but he tires easily and fights every second of it-- he just doesn't like to miss a thing!  Saturday morning came so early... Grace had to be a the soccer field by 7ish... so leaving our house at 6 something was not my idea of a fun Saturday... Grier got up and begged to go but I told him he couldn't... and he went back to sleep for a little while.  We ended up going to the afternoon game. He had a great time at the game... not really watching but playing with a friend... I have been begging him to wear a hat but he refuses... I am glad that his baldness does not even bother him.... Sunday was almost an exact repeat of Saturday... but we added a family dinner to finally celebrate Jeff's birthday.

Grier went to the clinic today... his counts are all good... except his platelets are still low-- but they are OK to fly.  I am sure they will check them again in NYC.  Grace, Grier and I leave tomorrow for the BIG APPLE... They are very excited... Grace has not been in almost 3 years... and Grier is excited to have someone else besides me going along... I have not decided where I am yet... I can be in total denial and enjoy the city.... or I can keep asking myself... Are you sure this was a good idea?... and what happens if scans are not good?? Am I going to be able to hold it together??? I keep telling myself I can... and have before... so we will see! We have other friends in the city this week scanning... so we are excited to see them.  I also am going to try to see Gretchen and Ella.. Our plan it visiting, shopping, scanning, and sightseeing in three days....  I think we can... I think we can....

Hayes and my mom are going to enjoy Spring Break in Florida... and Jeff will be here holding down the fort at home and work.... More updates from the Ronald McDonald House... I can't wait to see Grace's reactions.... because this is not as fun as she thinks it is...

Amy

No change

Well.... His counts did not move at all. I would have lost a bet if I would have made one.. Especially since we doubled his neupogen last night. His platelet count was 10... usually they give a transfusion for 21 or below.. So he got platelets today.

The rest of the day was spent visiting... We had a busy day with visitors and it made the day fly by. He even had a surprise visit from his teacher and principal! He had a good time showing everyone his collection of legos he has made up here.. He also gave some rides on the hospital bed, played some cards, played a few games of horse and drove his remote control car around the room.

Nothing else new to report.. We have settled into a routine here.. Not ideal but it is working. Hayes and Grace have stayed on their schedule and that is always my goal.. I like to keep them as normal as possible... I am not getting to see them too much since I have only been home for maybe an hour each day -- yes, I am getting tired.. I have been asked how people can help and I just don't know yet. I am just taking each day and being as flexible as I can be. It is frustrating to be here but we don't have control over his count recovery... So we are making the best of it. As crazy as it sounds.. Grier and I manage very well as roommates in a small room with constant interruptions....

I am still hoping for a discharge tomorrow.. We just need to get through tonight and see what the lab results say in the morning...
Goodnight from the 11th floor at LCH..
Sign My Guestbook

Today was one of those days I do not want to repeat but it seems that this is the 4th time.... This morning Grier woke up with hair all over his pillow and sheets.... He did not notice much and I was not making a big deal about it. As he was playing it kept falling everywhere... Luckily we had given him a buzz before chemo so it was not as much of a nuisance as it has been in the past with his long curls! He finally asked " is there a bald spot on the back of my head?"--- then we had the discussion that we have had more then once... A little different each time because he has been a little older each time. He announced he did not want to be bald AGAIN-- and in typical fashion I said.. I know but You know your hair always comes
back.. and he said yeah.. In like 2 years!!! He then informed me he was not going to school bald! I told him he could wear a hat all day and he seemed OK with it.. But mentioned several times today that the was not going to school BALD! During the day his hair was pulled out by Grier!!!!! Actually not my
favorite thing to see... I also got the lint brush out and rolled his head and shirt all day to help with the itchiness ... There were no tears like last year.. but he is very aware of his baldness... I left for a little bit to watch Hayes play baseball and to get Grace to soccer and when I came back he was almost completely without hair!

I had hoped we would have gotten the green light to get out of here today... But after getting the lab results back .. It was a no go! He still have no signs of count recovery! He also has a molar coming in and it is painful and inflamed .. Which is not a good mix with no immune system and low platelets.. So that was part of the reason to stay too.... I am hoping we can go home by Wednesday. Hard to believe we got here last Wednesday!

We were lucky to have some visitors today... IT has been helpful breaking up this long day... Except for the dietician who pissed me off as soon as she opened her mouth.. It might have been good idea to get his history before she asked me if he eats anything besides chicken nuggets? I said... Yes, a lot of things.. Actually he eats really well when he feels good.. And she said A YEAR AGO she remembered he only ate chicken nuggets and she was looking at his height and weight and his height is below normal... I said, well.. Do you think it could be the last 4 Years of chemo, and radiation...? I really wanted to say a lot more but young ears were in the room . Needless to say after I gave her the low down on his food likes she left said everything seemed fine..
Hopefully we will have some signs of neutriphills tomorrow... He is doing really well being patient and just going with the flow... I am about to go crazy... I hate looking out the window and watching the world doing normal stuff as we are stuck here in a room.

Weekend update.... Still on the 11th floor

Here is a quick weekend update... Grier is still being held captive by LCH because he still has no immune system... He feels pretty good... He started eating a little on Friday afternoon.  He requested a moo moo mr. cow from Moe's-- and actually ate a little bit of it.  We have been playing HORSE in the room... doing lots of LEGOS... and had some visitors to break up the day.  He got a blood transfusion on Friday.  His hemoglobin was a 6... but you would not have known... except that he looked pale.  He was busy and talking to everyone that came into our room.  During the blood transfusion he starting shooting baskets.... so he did perk up a little bit.  He has had quite a few surprises this weekend... Obviously his love of orange and Clemson has inspired people to send him so special gifts.  

Grier's new warm-up from the Clemson Basketball team

The plan is to continue and wait and do the neutraphil dance!!! no, seriously... we just have to wait for the neupogen shots to start to work and his body to recover from the very toxic attack we gave it! His mood is pretty good... Jeff slept at the hospital this weekend to give me time with Hayes and Grace and to be at home a little bit and actually sleep... My mom has been up there some this weekend to to give Grier a new face to play with... There has been a lot of switching places... but that is how it has to be when you are juggling so many schedules.... the best news was that we did not have one game this weekend for anyone so having that off our plate was a huge help! It was not planned we just got lucky!

one of the many LEGOS he has built the last few days!

The collection!

Visitors are OK as long as you are completely HEALTHY and smiling :)

I have a feeling we are close to getting out of there... as long as no more fevers show and there is some movement of his counts!  Cross your fingers... 

I wanted to share this video with everyone... Pete Nickell made it for us -- I am not so good at making short and to the point movies --- he did a great job!! it is from the BIG 2010 Bake Sale from Dec. for Cookies For Kids Bake Sale. 

click on the link to see it.... it is very inspiring to see how many people came    together on a very cold, wet and icy Saturday to show their support and donate to Cookies For Kids Cancer... 

The other link I wanted to share is the new cookbook coming out in September-- 

Gretchen Witt (Liam and Ella's mom) wrote it and from what I know it is going to an awesome addition to your cooking library.... not to mention that the proceeds will go to Cookies For Kids Cancer... I have pre-ordered mine and suggest you do the same.  There are some Charlotte photos in the book from past bake sales-- plus other inspiring stories...

here is that link...cookbook

I know everyone is ready for Spring Break... well, almost everyone!  As much I would like to say we are off on an exciting trip as a family of 5-- it won't be happening yet... I am waiting on word from NYC as to when they want us there for a scan... it has got to be soon after he recovers enough to fly. Then we will see what the next step is. I am waiting for the day all the stars are right and we get to plan something and look forward to it... 

Tomorrow is Jeff's birthday.... we have done cake in the hospital before... actually lit candles and thought we were going to set the alarms off!!! If we are still there.. it might just be a quick cupcake-- no candles..

That is about it.... I need to go get our taxes together--- fun!!! Then I am headed back up to see Grier... I need a rematch of HORSE... he beat me yesterday!

ONE MORE THING... Grier's K class is getting ready to do a map project.... They would love postcards from all 50 states... Since I know this blog is read by so many I thought this would be a good way to get a postcard sent... If you would like to send a postcard to Grier's Kindergarten Class.... They will read them all together and color in the state on the map where it came from.... 


Grier Christenbury's Kindergarten Class
Selwyn Elementary
2840 Colony Road 
Charlotte, NC 28211

cookies for kids cancer wrap-up Thank YOU video from Dec. 2010

Wednesday was a pretty low-key do nothing day..... Grier didn't have a lot of energy and was NOT eating or drinking much at all... I was just hoping we were going to make our clinic appt. on Thursday morning.... BUT around 1am he spiked a fever... and Grier and I left for Hotel LCH... a fever and no immune system is nothing to fool around with so they told us to come in... and I know it means for a few days at the least.  As soon as we arrived... the process we know all too well started... port access.. blood cultures.. and hooked up to IV antibiotics... He was a very good sport and just rolled with it... finally going back to sleep at 3am! 

This morning I left around 7:30-- to go home and shower and go to Grace's school for her wax museum presentation... and I came back to LCH and Jeff went to work... Grier needed platelets so they gave him a premed of benadryl and tylenol and he was napping most of the afternoon... still not eating and I have been trying to get him to drink... he was a little dehydrated.  He also has been busy building legos.. and making blood soup... 

I am sure he will need a blood transfusion tomorrow... he looks very pale to me and the energy level is just not what I am used to with him.  I am not sure we will be discharged for the weekend...  

Hopefully he will perk up and start eating...  
Just par for the course right now-- sucks... but this is to be expected with this dose of chemo. 
 

It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.

Rose Kennedy

US wife of Joseph Patrick Kennedy Sr. (1890 - 1995)

Yesterday was a little like dejavu.... I seem to forgotten the days after the last 12 rounds of high dose chemo... the non-eating, begging to get him to drink SOMETHING, and making anything and everything he asks for in hopes that he will eat it but as soon as he gets it -- he is not hungry anymore or changes his mind!  It is nothing new or out of the ordinary but I have forgotten what a pain it can be and I feel like the biggest nag! He seemed to enjoy sunchips so that is mostly what he ate yesterday!  I also have forgotten the feeling of giving him a shot and his anxiousness leading up to the whole process.  He hates them and I hate them but we have to do it... so that is the attitude we have.  The most ironic part is that other than the cabinet full of medicine we have again... Grier feels really good. You can see some darkness under his eyes but other than that he is active and energetic.  Monday will be the day we see where we are in terms of how his blood counts are being hit by the chemo. He will have labs drawn and we can see how his blood counts are hanging in or NOT hanging in.  Hopefully he will not need any blood or platelet transfusions yet. 

In the midst of finding out about this relapse and figuring out where we were going to be for treatment I forgot the "school" component.  I was so used to being at the WDS where everyone just knew our crazy life... So, I had to go back to the drawing board... dig out those old letters that I have sent home before and revise it for where we are now.  I know his teachers will be great at helping kids understand the questions of "where is Grier?" but I worry since we try so hard not to treat him different and keep him a "normal kid"- I know some disagree... but who cares.. until you have walked in these shoes for 4 years... then come talk to me.. I think Grier is the way he is because of the way we have made this our normal and he doesn't think it is any different. As he is getting older, it will be harder to control the comments... but I am asking you AGAIN.. please do not ask about Grier's health in front of Grier or to Grier.  I know people google things... and I don't talk statistics for a reason.... mainly because I don't ask anymore... it does NOT matter to me in anything we are doing.  It will not change the course we are on -- 

If you need help in explaining to your child then feel free to use the wording we use... We talk about getting medicine and how some medicine you can get at home and some special types have to be given at the hospital.  Grier gets both types.  Sometimes medicine makes you feel bad before it makes you feel better.  And sometimes it can make your hair fall out... but that is NO BIG DEAL because hair will grow back.  We don't use the C word... the medicine is making a group of unhealthy cells go away - My biggest fear is that he is going to ride home on the bus and have someone make fun of him like they did wearing glasses on the first day... 

OK-- a quick subject change... May is fast approaching... I think I have mentioned that cookies for kids cancer wants 700 bake sales in May to honor Liam's 7th Birthday.  I know of a few going on... but would love to hear about some more.  Please remember that they do not have to be HUGE bake sales... have your school do one at a game or you office can do one at lunch.  All of the bakes sales in MAY will be matched by GLAD up to $225,000-- so a $100 bake sale will be $200 towards research for pediatric cancer...  Please remember pediatric cancer is ALL cancers that 18 and under have..not just Neuroblastoma.  These grants are applied for by top researchers all over the country and awarded by a board.  I know there are lots of ways to donate these days... but I would make sure if you are putting effort into it that your donation is going where you think... you would be surprised how little of the $100 you raise for Relay of Life actually goes to help kids.  That is a whole post for another day.... Please consider doing something for CFKC in MAY... plan a carwash... do a raffle... sell a bracelet... WHATEVER... Liam fought too hard for 4 years and should be honored- Start planning something.... and tell us about it!

www.cookiesforkidscancer.org