She loves Charlotte for how it helps kids | CharlotteObserver.com & The Charlotte Observer Newspaper

She loves Charlotte for how it helps kids | CharlotteObserver.com & The Charlotte Observer Newspaper

MAY--- WHY are you so BUSY?

MacLean and Ashley's surprise on Queens Road- :)

Here is the second part of my post...

I have been looking forward to May for awhile... not because school and sports are ending but I was excited to see how the challenge for 700 bake sales for Cookies For Kids Cancer was going to unfold... This was a nationwide challenge in honor of what would have been Liam's 7th Birthday on 5-13.  The Glad company once again rose to the occasion and said they would match up to $225,000 that bake sales raised in May.. The Charlotte area did not disappoint... we have had bake sales popping up like crazy... and businesses are supporting CFKC this month.  I already told you that just last weekend we had two large bake sales.. one on my street put on by Grier's preschool teachers and friends.. and one that lasted two days at the Fort Mill Strawberry Festival.  We have several more to come the rest of this month... I am including their fliers as a save the date for all of you... I know some of you may be sick of baked goods... BUT remember you can always go and support the sale.. make a donation and go deliver some homemade baked goods to a neighbor... a homeless shelter.. a youth group... an office -- YOU get the idea...  IF YOU WOULD LIKE TO BUY THE LEFTOVERS FROM ANY OF THESE BAKES SALES--- LET ME KNOW- Hopefully there will not be any leftovers...!

More info on Philly.... My mom has decided to go to Philadelphia with us on Sunday.. she will fly home on Tuesday.  Grier and I still don't have a set date to fly home.  For the first time in awhile I have felt good about going into this unknown "investigational" trial.... and it is all because of caringbridge guestbook entry.  Caryn ( mom of Nick) whom I mentioned a few entries ago about his 6 year fight with NB and how I admired his attitude while while fighting, signed Grier's CB page with a few words that made me feel better... She said we were lucky to be on this trial. Thanks CF that made my day to read that... I am always doubting these decisions -- just wish there was a "guarantee" 

PLEASE visit the NEW CAR WASH on Tyvola... 

WIKI WIKI--

Use the code 0513 when you purchase a wash and a percentage will be donated to CFKC-

Also buy a month's worth of washes and they will donate $10-

This is on your way to COSTCO so stop by and get a car wash on the way!

We have two upcoming days at KIXX SHOE store... and Which Which on Woodlawn... Look for details to come soon.... and wait to buy those summer shoes until the Kixx day!

Just a quick update to say sorry to all those that have called or email me lately.... I have been swamped with planning our Philly trip--- almost to the point it is comical.... Today I had a call from corporate angels... they had a flight to offer that was from Charlotte to Teterboro, NJ-- after a ton of questions to them about how they thought I should get to Philly from Teterboro I decided to take the flight.  The ironic thing was that they would not let me say "yes" and then look for transporation... so I took the leap of faith and said "yes" knowing they do not like us to cancel on them and googled travel from Teterboro to Philadelphia. Corp Angels said "Just take a train to Philly.... well, that sounds very easy and if this was any other kind of trip other than MEDICAL that might be fun... but after looking into how we were going to get to the train station... switch trains in Trenton, NJ and get a cab from the Philly train station I had to say ENOUGH! This was all going to happen late Sunday afternoon... so I decided to look into plan B -- a car service... after a few calls I found one that will pick us up in a Hybrid and drive us to the RMDH in Philly-- this is assuming we get the OK on Sunday morning that we can check in-- :) I am being very sarcastic because I find some of these helpful rules to be nothing other than annoying and stressful.... and considering we are not on a fun trip... I don't think any more stress is needed... So... so far we have a way to get to Philly.  Now we need to wait until Sunday morning to see where we will sleep~ Thanks so much to everyone that has offered contacts for the Starwood Hotels... that would have been great if there was a room available for the time we are going to be there... I knew I was in trouble when I was on the phone while they were checking all the hotels and she says.. "WHAT IS GOING ON IN THIS WEEK IN PHILLY?"- booked is the word of the day....

Besides travel arrangements I have had a million phone calls from CHOP... which is good... I have no idea where to go.... I am feeling very lost and alone as I navigate away from Sloan.  Today I answered all kinds of questions from anesthesia... and I finally just told them... Grier likes to push his own "white medicine" and I am holding him as he falls asleep.... I think it stunned her... but the fact is he has done this more times than I can remember~ She said I would be in the room with him as he went to sleep... so all the other questions were routine... YES.. if anyone is wondering he was a FULL-TERM HEALTHY BABY and other than stage 4 Neuroblastoma times 3 relapses he is pretty normal! Ugh... that question always makes me think did I do something to make this happen? As you can tell I am over this craziness today... 

More to come later-- I have a purple storm trooper soccer game to attend... and then I will do an update on all the bake sales going on this Month.... :) 

In the Air again..

Grier and I will leave on Sunday for a week long trip to Philadelphia.... we got his scan schedule and it all seems too real right now.  Every hospital does things differently so this will be a whole week of changes.... starting with his Bone Marrow tests on Monday morning. They only do 2 sites... and they do it with general anesthesia... TWO HUGE changes for Grier... The docs said he could choose front or back...RIGHT...... I think I will choose... ugh! Tuesday he will have a CT scan and his MIBG injection and on Wednesday he will have his MIBG scan... we will go over results.. and if there are no surprises.. we will sign consents and he will get the first dose of the "millennium" trial-- we will be able to go home on Friday evening.  We are going to try to stay at the Ronald McDonald House but we will not know until Sunday after 10a if they have a room for us... They said they help find a hotel if not... the only issue is that it is graduation season and there are lots of schools in the city... might make it a little tricky.  We have a request in for corporate angels... and I can only wait so much longer... gambling with airline flights is not my strength. I wish they would just let me hold some seats for a few days... :)

Next week is NOT ideal in our life schedule... but NB has not waited for "ideal" in the last four years so I am hoping the absence during EOG ( END OF GRADE TESTING) week will not make a huge difference.  Honestly my two older kids should be used to this crazy life and it might not make one difference... possibly even make them do better. I will miss some  things I had on my calendar too... but again nothing new~ it will all be worth it if this drug works.

As I stare at my suitcase I have not unpacked and the toiletry bag that I live out of, I remember I have not updated about our trip to CHOP last week. It was a really quick trip but loaded with lots of information, so much so my head is still spinning. Jeff's dad drove us to Greensboro late Tuesday afternoon .. Our corporate Angel Flight was not until 6:35. We landed in Philly later than expected.. But we had a nice easy flight. A "red" cab drove us to our hotel ... Grier thinks the cab was red because the Phillies are red! We checked in the hotel and walked out to go find some dinner and explore the neighborhood. We ended up eating outside at The White Dog cafe.. It was recommended to us by several people so we decided to give it a try. Grier's first observation of Philly was that it was so quiet.. He said, Where is everyone?" After dinner we walked back through the university of Penn and settled down for the night. Wednesday was busy.. And we woke up to rain which was going to make our planned walk a little tricky... We ended up having breakfast at the hotel... I didn't see they had room service do we went to the area where they had continental style... I don't think it phased him... He did have a flat screen :) Our Appt. was not until 12:15.. So we packed up and decided to leave our bags at the front desk so we did not have to take them to the hospital with us. The funnies comment from Grier was ..mom, are you going to leave the beds like this? He is so used to me CLEANING and BOXING up sheets .... And I said, YES with a smile on my face -we walked around university city area and saw the first Ronald McDonald House ever built and more of the Univ. Of Penn... We stopped for lunch at a cheese steak place called Abner's.. Grier had his first and I think I need to get them to make it with cheese wiz next time.
The day went fast.. And before we knew it we needed go pull out the map and walk towards CHOP.
My first impression is that it is ginormous! We had to do all. The insurance stuff and fill out many forms... And then we waited... We first met someone that did Grier's blood pressure, height and weight. Then we went back to thewaiting area. The next person was from the NB team.. She was a fellow and wanted to go over his 4 year history.. After a little more waiting we finally met Dr. Mosse. She was very attentive and gave her ideas for Grier in regards to what she thinks we should do. We actually found out we had more choices than just MIBG therapy. CHOP has 2 trials that Grier should qualify for. He will need to repeat scans again at CHOP because we were just at the 15 day mark from the scans we did in NYC in April.
We should find out this week when those have been scheduled so we can get started on the Aurora A Kinase Inhibitor phase 2 study. The purpose of this drug that is given by mouth for 5 days is to stop tumor growth. We don't know if it will work on Grier but we are going for it.  It does not come without side effects... his blood counts will be effected and he will probably need platelets - there is a list of other possible scary side effects as well... I think we will start with this.. as the doctors have said.. he has had a lot of chemo.. and it will stop working or cause more damage than good. I think this is a good time to try other things.. and we always have the "wicked chemo" to use but for now it will be on the shelf!  After we found out the options we had we ran out of the hospital and caught a cab... Stop quickly at the hotel for our suitcase and headed to the airport. We just made our flight home... Security line was crazy... And we ran all the way to the gate.. Even slipping in vomit right before boarding. Very gross!!!
We landed in Charlotte around 7:30. Got everyone ready for the next day and then continued with our busy week...


This weekend was one to remember. There were 2 bake sales going on... One was organized my neighbor, Melissa and Grier's preschool teachers he had at First Pres. They had an awesome sale and have raised over $2700 for pediatric cancer research...this will be matched by the Glad Co.-- a huge thank you to all that helped and gave up their Saturday to hang out and work the bake sale table. After I left that bake sale, I went to the Strawberry
Festival in Fort Mill to check out the second bake sale that was in the 2nd day..Kerri, Austen, Tracy, and the rest of their crew did an awesome job for over 15 hours.. They were very successful to and their total is over $4,000- before the match from Glad.


A huge thanks goes to the organizers and everyone that baked and attended the bake sales...you all are good cookies in my eyes.


more to come later as I find out the details...
AVC

Philly ~here we come!

I wish I had the time to actually write a post when I am thinking about what I want to say... every time I sit down to write something meaningful it always seems to turn out like an itinerary of an upcoming hospital trip.  I told Grier a few days ago that we were going to Philadelphia.  He asks if we were going back to NYC when he overheard me on the phone making reservations so it was perfect timing.  At first, he asked WHY are we not just going to NYC... and I said we are just going to see what another doctor has to say to us.  He was standing beside me at the time and I was on the Sheraton Website... the hospital suggested that hotel because it is close to CHOP and they have a CHOP rate!  He saw the pictures and said, oh OK... are we staying there? I said, Yes... and he said, "Do they have room service?" Another, Yes .. and he said, Is that a flat screen TV on the wall?  OK.. at this point I am thinking how dysfunctional are we???? He said.. Well, when are we leaving? Then he ran out and began to tell everyone he was going to Philadelphia.

We leave for Philly today... we lucked out and got a flight through corporate angels to Philly... but we have drive to Greensboro to leave.  It seemed worth it at the time...  we have never done this before.  We are going to stay at the University City Sheraton in Philadelphia for one night.... and yes, I will get the little man some room service for breakfast! We have an appointment tomorrow around noon... and then will fly home and be back in Charlotte by 7- Grier is excited... I feel like I did when we left for NYC for the first time in Oct. 2007~not even sure how to describe the feeling.... but I get waves of nauseousness just thinking about the trip!  Jeff is going with us... that was another funny conversation... We told Grier that Jeff was going and he hesitated and said, "Why is mom not going?" I told him I was going to and he then was excited...

School is going well for Grier-- He is happy to be back with his friends and teachers... very happy! I wish we could just keep this normal going until the end of school.  He had one day last week that he was very upset about going and we found out that he was nervous about practicing for "lock downs" & fire drills.... I knew he was very edgy at the hospital the last time we stayed because they had fire drills all day long... with the help of his wonderful teachers... he is feeling better and not so uneasy about the unknown drills they practice!  We have been very lucky with teachers... I could not have asked for any better teachers for Grier... and the bonus is that we still keep in touch with them.  I told someone the other day that I have sent him to school right after bone marrows... after a huge surgery last year and after rounds and rounds of chemo... I don't have to do that... I could keep him home... we actually have a good time together... but I trusted his teachers so much and knew he was in the best hands while he was at school I felt good about letting him go and being normal.

May is finally here... there are going to be bake sales galore around the country... in honor of Liam's 7th birthday... I am so thankful to all friends and Grier's WDS teachers for putting on bake sales this month..I am going to post about all of the upcoming bake sales in our area... but I wanted to say THANKS to those that are already working on them....

Someone sent me that cancer poem about what cancer can not do.... and I have to say... not sure I believe it.... I have read it and can tell you that cancer does do all those things to you... When I was  in NYC last time waiting for the talk with the doctor I was sitting beside another mom and her child and what appeared to be her very good friend.  It reminded me of my visits with my friend, Anne....  The friend was trying so hard to keep this mom's mind off of scans.... and all the what-if's.. They actually met with the doctor right before we went in.... and I passed them as it was our turn in room 6-- I did not know them but I could tell that they did not get good news.... I had been thinking about them a lot... and I saw a picture of a little boy on facebook and recognized him.... well, it was the little boy in the waiting room.  After reading his blog, I knew it was them... I knew the news was just not good... but horrific... ugh.. makes me so angry... and then laster this week another brave family lost their 21 year old to NB... Nick had an attitude that was very usual for the teenage group... he wanted to get on with life... do his treatments... and continue to live... He died of complications from treatment.  I am just saying all this because cancer is different when you are dealing with a child....

I guess I need to go pack for this short trip.... I am cautiously HOPEFUL that we will find a treatment that works and gives us more normal -- not too much to ask...  but nothing new that every parent I know in this club wishes for too!

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

   

We made it home this morning by 10:30...  Grier was excited and starting talking a little more as the time got closer to going home.  His chemo was only 30 minutes today so as soon as it finished we left... well, we did have to get discharge papers and figure out how we were going to get all our stuff to our car in the pouring rain in ONE trip.... both of us opted NOT to wait on guest services... so Grier said he could walk and we loaded UP the stroller.. it was quite a site!

Last night went as well as it can when they are giving him so many fluids... it just means there is a lot of peeing... at one point he said I am tired of going to the bathroom!  Neither of us slept well, between 2 bed changes in the wee hours of the morning and the hourly "MOM.. MOM.. I have to pee" it was a long night!  I was awake when a text came in from my NYC friend, Gretchen... I think it shocked her when I replied at 1:30am! Actually probably not.. she has experienced the hospital sleep... so she knows it really does not happen!

This afternoon, Grier and I watched a movie and we both fell asleep... he is in good spirits... taking his medicine well... I think we are going to try school for a little while tomorrow... he has an appt. in the afternoon for the last dose of chemo for this week..  He wants to go so I am following his lead and letting him enjoy his time with friends... we will be on "house arrest" soon enough when his counts bottom out so as long as he feels ok he can go and have fun!

Thanks for all the cards and well wishes... he has been thrilled with all his orange surprises.. :)
I am so happy we survived this hospital stay... actually not only survived it but for the most part we had a "perfect experience"-- everyone did what they said they were going to do!  We had some great nurses... especially Chante' aka "scrappy"-- she started our stay off just right!! Even the girl from food service surprised Grier with grapes this morning... he did not ask for them but I guess that sarcasm works sometimes... !

This picture was sent to his class.... They sent him a group photo today with all their thumbs up.... so Grier sent this back to them!

Day 2 of chemo went pretty well.... we started off on time and Grier felt pretty good. He ate his breakfast... we went on some field trips to the 12th floor Garden?? ( that is a ? because not sure I would call it a garden), the gift shop, outside for some fresh air, and finally to the cafeteria in the main hospital--- he rode the IV pole the entire time and trust me when I say we were getting some looks as we went from place to place! He was really excited because we had some visitors coming after​-​school. After a quick visit to the play room he wanted to come back... he complained of a headache. He decided to wait in bed for his friend. He was getting quieter and quieter and you could see him trying to fight through it because he had plans.... Leila got here and he was quiet... and all of a sudden he was nauseous.. chemo had just ended for the day and I was hopeful this was a wave that he was feeling. Not so much.... the headache continued to get worse and then came the need for the PINK bucket.... I thought he would bounce back after that like he usually does until he curled up in a ball and the BIG tears started.... his head was really hurting... we regrouped a little and added some medicine to his IV... and it knocked him out. I guess a good thing... but he missed his visitors that he was so excited to see. I did find out later that his zofran had not been given around the clock... and we had missed some doses today.. that has all been fixed and we are playing a little catch up on the nausea...
Tonight he is feeling a little better... his face is puffy from all the fluid they are giving him... and he is peeing every 30mins- 1 hour-- all night long. jeff and my mom were here when I ran home to see Grace and Hayes... and to take a shower. That is the hardest part of being in Charlotte... trying to balance home and hospital without the guilt... When I am in NYC it is easier because I just take care of Grier... here I am trying to juggle home and hospital.. I had this grand idea this time to pretend I was out of town.... and not try to do the "home" part.. but it did not happen... oh well, one day I will figure out how to make this work for all of us.

We hope to be home sometime in the morning... he gets a 30 min infusion of chemo and then we are out of here.... IF not unexpected happens... PLEASE... We both need a good night's sleep.

That is about it... Grier and I are getting ready to read the cards that his class made for him today... and his reading buddies class.. Mrs. C & Mrs. S brought those today... he is very excited and hunting for a few from his good friends!!

I will leave you with a funny story about this place.. Food Service is lacking here... and seems to have gotten worse since the last time we stayed overnight. Grier had ordered a banana for breakfast... along with some other things and they brought a GREEN banana... She says as she brings it over... This is GREEN but put it in the sun to ripen.... I laughed ... and said OK.. and later looked at the GREEN banana .. How long was it going to take to ripen.... we are planning to leave tomorrow? Then she came for a lunch order.. and we ordered grapes and other things... she delivers and says they are out of grapes... This cracks me up... I think LCH needs to go grocery shopping... first they are out of Kleenex... and now grapes! If only the customer service was like the Ritz... not just the bill!

MONDAY, MARCH 28, 2011 3:39 PM, EDT

Just a quick update to let everyone know that chemo started early this morning.... yep, you heard that right... after 11 rounds of HIGH DOSE Chemo we finally got it during the day.... 

Last night went well... we both stayed up too late... and Grier finally fell asleep around midnight! We were chatting and playing Angry Birds... Grier and I started to talk about "wishes" and I asked him if he remembered when the people from make a wish came to our house.. he says he does but who knows... I then asked again if he could wish for anything what would it be?  He got very serious and said he wished he was not so scared to sleep in his own bed.  hmm... not a wish for make a wish but we will keep trying to come up with something! 
 I am a very light sleeper... and just couldn't get much sleep but I did relax and watch Grey's Anatomy at 1:30am!  I also read the old blog to see how Grier did with this type of chemo last time.  He had it in July 2010... and from the sound of my blog he did fine.... I remember that week well, he was in- patient and was discharged on Wednesday and went to be with the family at Jeff's mom visitation that night.  The next day he did not go to the funeral but after I took him to chemo I dropped him off with Susanne and they rode bikes around the lake while I met everyone at church.   I am really hoping this week's chemo is very similar with the side effects. 

My mom came today and we did a switch so I could come home and take a shower and check on Hayes.  He is not feeling well.   

Heading back up to LCH- 

Amy