TGIF--

oops-- I forgot to update on Wednesday...

Grier ended up going to the clinic to have counts checked again on Wednesday.... I figured he was going to need platelets because the shot bled a little too much and bruised right after I gave it Tuesday night ---
His counts came back and his platelet count was 4~ I don't think he has ever been that low before... Grace went with us~ so the three of us headed to the infusion room.... Grier was not disappointed and Grace must like it because she hops up and wants to go with us-- Platelets only take an hour so it was not a crazy long day.... They watched part of a movie and Grier colored NFL team logos...  We were on our way home by 11--- The rest of his counts had not moved much and his infected bug bite on his face had not gotten better or worse.... He had a reaction to the platelets ( hives and itching) after they finished infusing.... so he got some IV benadryl and it seemed to clear up the hives..  The best part of Wednesday for me was a much needed break from House Arrest... I had dinner with MacLean and Lesa and laughed so much that my cheeks hurt...

Thursday was pretty much the same.... We did have a visit from Kids Path (our hospice and palliative care nurse and social worker)-- just a routine visit because we had not seen them in awhile~ so I asked a million questions about things I had to do to get ready for K.... I have been very spoiled with our preschool so going to K is going to be an adjustment for me too--- Let's hope someone at his new schol answers my emails soon... or I might write a whole blog about them :) MacLean also came and helped me.... I started my huge project of organizing Blue Cross/ Blue Shield , MSKCC, and CMC mail..... There is so much paper.... talk about going green.... what a waste!.... After my trip to target to get something to hold all the papers.... I tackled the pile(s) that were scattered all of the living room....

Today was another clinic day and the good news is that he did not need blood or platelets... I was happy... he was not so much... he had big plans for the infusion room... But it did not take long for him to realize that we were going home.... and on a field trip since his counts were up--- We went to the Apple Store to see if I could get Hayes' itouch fixed.... ( some of you know the story...)  and to look around Dick's Sporting Goods-- always an adventure..... but today it was cut short because the boys just could not behave and kept arguing the whole time-- so we left and came home.... I would like to blame it on the heat but they are like oil and water and it is driving me crazy.... add to it a 13 year old "normal" moodiness and I quickly lose my "halo" that I do NOT have!!

This has been a long week.... lock down in the house was tough... also dealing with what everyone deals with normally on top of all the NB stuff has made this week extra long.  The good news is that counts are on their way up--- I give the last ( for now) G-shot tonight and we wait and see what happens on his own.... Also we managed to luck out and stay out of LCH for the first time in between chemo-- We have been home for 12 days in a row.... Monday we go back to the clinic and if all looks good he is going to the Weekday School for a couple of days... cross your fingers--- he needs some school time with his friends...

We plan on starting the next week of chemo on Aug. 2nd--- I use the word "plan" but I shouldn't.... Assuming his counts are good.... and everything else is good he will start the daily 1 hour infusion and pills-- for 5 days.

• MONDAY, JULY 19, 2010 12:40 PM, CDT
  We went to clinic this morning and had his port accessed...and had his weight, height and temp taken... and then had a check up by Dr. M-
  The good news is that he did not have a fever when we were there... He was in his stroller so that is always a clue to everyone that he was not feeling great.  
  
  His check up went fine...... his counts are LOW -- no immune system and his platelets were a surprising 13-- They usually transfuse at 20.... but they are finding that is not necessary all the time so he did not get a transfusion.  His Hemoglobin is 10-- which is good ... Dr. M liked the plan that Dr. K came up with--- I asked if he thought he was just buying time to come up with the larger plan and he seemed to agree... but this low dose should not affect counts and basically his quality of life while on it should be fine.... I worry about the diarrhea but we will be more pro-active and give him something before we start the " I run to the can"-
  
  Well-- the bad news... The temp is most likely coming from a mosquito bite that Grier has on his face that is infected.. (staph)-- Most people with immune systems would fight this easily but without one he needs some help..... I had been putting neosporin on it but now we have switched to Bactroban....and he is taking an antibiotic ( Clindamycin) 3x a day.... we are still on fever watch and he said we had a 50/50 chance of being admitted in patient - ugh.. a simple bug bite--
  
  That's it.... he is napping right now.... When we were driving home I explained to him that there is no wrestling with Hayes today.. no jumping, and diving on the furniture... I think he understands that low platelets are not fun... We go back on Wednesday to check counts again...
    
  
  
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• MONDAY, JULY 19, 2010 6:38 AM, CDT
  Well-- we woke up in our house....... actually Grier is still sleeping.  And I never really slept... lots of temps were taken last night and the highest was 99---- Around 4:30 he woke me up to tell me his leg was sore..... this happens sometimes when the neupogen ( G-shot) starts to work.... meaning his marrow is doing its job!  It can gives you bone pain... so I rubbed his leg and he fell back to sleep--- 
  
  I took his temp around 7a and he is back to 100.1--- ugh We are going to clinic at 8:30 so hopefully we will have a better idea if this is a nutrepenic fever -- I have a bag packed just in case we get admitted to the 11th floor--
  
    

Just a quick update to say we are living on the edge right now......... ha! ha! I have been taking Grier's temp for the past two hours and it is up and down but we have not yet past the magic 100.5 auxiliary~ It has been 99.9--- 100.3--- 100.4 BUT not that magic number--- so the nurse and I have been chatting often on the phone.  He is asleep now.... and he is 98.6-- go figure.... so tonight will be FUN.... good thing he sleeps close because I will be able to tell if is warm.... Hopefully we can make it at home for the next 10 hours... we will be in the clinic in the morning anyway....  She suggested that I go get another thermometer and I agreeded.... but I have a ton of them.... and they all stink!

Grier did not do much today.... Grace, my mom and I went to Costco and Polished..... I know quite a combination.... and the boys stayed home.... He is in a good mood.... and understands why I am taking his temperature so often.... he told me before he went to sleep that he just wants to get his port accessed in the clinic because Kristen is so good at it--- :( And he wanted to know if he had to sleep at the hospital if he could have visitors.... ?  I would say he knows the routine....

alright... pretty boring update but I am going to try to sleep in case we head to LCH in the early morning hours...

Friday was just as long as I had anticipated..... but everything ran like clockwork..... no big problems so our day was 8:45- 2:45--- not bad.... Grier got a blood transfusion and a platelet transfusion.  I am glad because late Thursday it was obvious that he needed blood.... no energy... and pale.  He was at the baseball game and just sat and watched... which is unlike him.  Grace decided she wanted to spend the day at the clinic with us so we just called Friday "Camp"--- She and Grier hung out... ate chick-fil-a-- ( well... she did).. and did crafts the whole time.  The infusion room was "fun" according to Grace.... THANKS SHARON and MOLLY!! Child life is the best....! Grier might disagree since we had typical port drama.... and he was attached to an IV pole.  It was nice to have a little distraction.... As we drove home yesterday, Grier asked if we could go for a bike ride when we got home... I always say yes... but I asked him to give me 20 minutes.... he watched the clock and we left for a ride around the lake.... I felt like some quiet time since we had been so busy for 6 hours.... Later that day we went to Hayes' All-Star game--- and Grier was full of himself.... amazing what a pint of blood can do!  It was a good thing he got platelets too.... he was wrestling with Grace... and it was making me nervous.... Some days I would like to wrap him in a bubble.... 
His appetite has been awful--- he keeps telling me he is thirsty but does not want to eat because he feels like he is gonna blow.... ugh... I wish that would pick back up-- Maybe when his counts start climbing..... he is still going down..... with NO immune system. I am still giving him the shots nightly... hoping they work soon.....

Today was a different kind of Saturday.... no sports... well.... Grace played soccer in Boone but I was not comfortable taking him there in case he got a fever.... so she went with friends.... Hayes only had a practice.. so Grier and I were home.... and house arrest is really driving us crazy.  I asked him if he wanted to go hit golf balls today and he was so excited.... we headed to the covered driving range and I watched him hit a huge bucket of balls-- 163 in all! He was pretty tired after that so we came home and rested for a little and he had a surprise visit from Leila.... he was shy when she was here... but has not stopped talking about her since.  Around dinner time Grier decided he was ready to go look at Mustangs.... so we headed over to a Ford Dealership and let him look and sit in some.... He had fun... and it was nice to let him do somethings he wanted to do.... Now he wants to take the Mustang Cobra on a test drive!!!  Dinner was at home but Grier requested queso since we are trying to get him to eat he can call the shots--- we called makeafoodiecall.com and had dinner delivered from Loco Lime ( never heard of it but it was good!).... ahhh--so easy & reminded me of NYC-


Speaking of NYC.... I finally heard from Dr. K yesterday... I was trying to get a date of travel so I could book some plane tickets.... Grace, Grier, and I were going to go because Hayes has baseball for the next couple of weeks--- well~ looks like we will not be going anytime soon.... ugh!  I swear as soon as I think I know the next step things change..... He wants Grier to do  Irinotecan (5 days, IV over 1 hr) + Temozolomide (5 days, by mouth), then 2 (or 3) weeks off, then repeat the 5-day cycle, come for tests 2-3 weeks later--- so that is the plan-- a very low dose chemo.... that SHOULD not affect counts.  I am going to have to talk to him a little about why he changed his mind.... I worry about chemo induced Leukemia... and I really wanted him to be at school at the beginning of the year.  He asked me today if I thought his hair would be back before he goes to Selwyn???? All I could say is I don't know but he looks cool either way.... curls or no curls!  


We go back to the clinic on Monday to checks counts again.... I hope things start improving this week--- if so he is going to go to First Pres for a little bit to see his friends and teachers at Uptown Fun.  A little bit of Normal..... I can not believe the last time he was there was the first of May.




Goodnight from Home--- yeah!!!! We have made it so far..... just hoping for good news from the lab on Monday.... his bone marrow has got to start recovering soon.... 

Grier's counts are LOW---- he will get a blood transfusion tomorrow to "juice up" for the weekend..... and possibly platelets.... he was at 118 on Monday and today he is a whopping 39--- so if he goes much lower he may need those too tomorrow--- 

House arrest has been really fun this week--- NOT really!!! I forgot how fun it is when all of are home.... Grier did go to the baseball game last night and had a good time--- you would have never known his counts are the way they are--- he was NON-STOP for 3 hours ( I mean running.. playing etc.).... he also used almost a whole thing of hand sanitizer....  We did get a little nervous last night after the game.... he was very restless while he slept-- and around 2am I felt him and he seemed warm...his temp was 99.8 so I waited an hour and took it again.... it was the same.... this morning when he got up he was not warm but pretty quiet... and SLOW.  His temp was fine at the clinic-- whew.... He is really pale and tired today..... all symptoms of low hemoglobin.... 

He told me yesterday that he does not think the G shots work.... I asked him why and he said well.... my counts are still LOW and I can't go anywhere!  

Tomorrow will be a long day at the clinic ( 5+hours in the infusion room)-- hoping to give Greg ( the valet guy) my keys by 8:30--- so we do not have to move to a different building in the middle of transfusions.... Hopefully the shots will start working soon.... I am thrilled we have made it home this long....!  

Monday at the clinic went as expected..... Grier is used to this routine AND the valet driver at the building our appointments are in-- he see us often now!!--- I asked him if he has memorized my license plate and he said almost--- Today when we drove up at 8:30-- He said-- Wow.. y'all are on a roll.... I said I know two 8:30's in a row.... but he was just talking about all the days we have seen him.... not the early time!  I told him it is hard work to get chemo...lots of appointments!  He is a really nice guy... I am glad I gave up the headache of parking in the deck...I am sure my car is too-- someone hit it a few months ago.... got to love those tight spaces....

Grier chose to have his finger pricked today instead of having his port accessed.... he would always choose that if given the choice.  After they collected the blood sample - he had a quick check up with Dr. M-- everything looks good... he likes how well he is acting after this dose of chemo... I asked him today if he was sure chemo was in those bags.... :) I was assured we are going to start seeing signs soon.... He wants us to come back on Thursday to check counts again... and then again on Monday to see him.  Grier ended up having to do another finger prick because the first sample was "clotted" according to the lab....  We finally heard that his counts were falling-- WBC 1.7 Platelets 116 and hemoglobin was 9.4--- his ANC was not back yet... We are officially on fever watch...... and we have started the shots again to help his white blood count recover- I have everything crossed that I can cross -- maybe just maybe we can possibly luck out and skip this inpatient stay-- I quietly asked if we had to "stay home" today and that was "suggested"... I was planning on going to the pool today... but obviously had not even looked at the weather!!! I also was thinking about taking them to a movie but we ended up staying home.... which turned out to be a good idea on this very rainy day.  Since it was raining I decided we needed the wii--- so with the awesome help from Brandii-- I learned that it could be fixed with a power cord.... I was pretty excited... and so was Grier when it started working again... Thanks Brandii for sending me the email and calling Game Stop!!

This week is going to be LOW key..... he may go through Target withdrawal---  but we are going to try to avoid crowded places....  I am going to give in and let him go to the baseball game Wednesday Night-- Hayes' team plays MP ( which has lots of Hayes' friends on it) and Grier has already said.... BUT MOM.. I want to see them play.... and I like BOTH teams so I don't know who I want to win it....  I am not going to make him wear a mask... but I will try to keep him away from the crowds.... and he will be wearing hand sanitizer.....

So... to sum today up--- Low Key.. and Low Counts.... (and 1 mom ready for school to start!)

Grier made it through this round of chemo .... he had one moment that he needed the "pink Bucket" and right after wanted me to go on "a chick fil a run"-- for breakfast.  Really hard to believe .... I was getting ready to leave the room to get him breakfast and making sure he had the "nurse" button in case he needed something and his "pink bucket" and our Nurse came in the give him some kind of medicine-- and Grier told her I was leaving and proceeded to say he always stays by himself at the hospital--- Our nurse was funny and said "really Grier"--- you always have someone here unless you want chick-fil-a!   He did nap a few times in the hospital... but I am not sure that was chemo or just being tired from being up all night for two nights... he has not napped since we have been home.  We were discharged on Thursday around 1--- he got his dose of topetecan and zofran.... and then he lead the way out the door to the car-- Dr. McMahon asked us that morning if we wanted to go home... and I asked him if people say "no" to that question?  He laughed and said .. yes... sometimes... I actually was thinking about saying no-- It would have made life a little easier to have someone come play with Grier at the hospital on Thursday night and Friday as we went to the visitation and funeral..... but I knew he wanted to come home.  We had our favorite nurses during this stay and they made staying in room 1 feel like "home"-- They even played card games with Grier and talked baseball into the early morning hours...   Dr. M even gave Grier a dollar for his tooth that he lost----- I think it was because G flashed that toothless smile every time he came in to check on him!!!

Luckily, Hayes and Grace kept busy this week.... sometimes they were with us at the hospital.... or at orthodontists appts.....or swimming with friends... hanging out at home... or with Maclean....  When I had to leave for the orthodontist appt that I had cancelled once before because of a "fever stay" a friend said... wow.. you still have to do "normal life" like the rest of us and the "hospital life"--- yep... she was right...

Thursday night he wanted to be with all of us at the funeral home for Mimi's visitation so he got dressed and went with us and made it for about an hour--- I think he finally got a little tired by 8pm.... It was nice to see the family and friends that came and visited.  We woke up very early on Friday so we could get to the clinic early (8:30 is when they open) and get his chemo started and done so I could get to the funeral.  Grier stayed home with Susanne... and was pretty excited about that... As soon as we pulled in the driveway from chemo he was ready for a bike ride around the lake!  My mom brought him to the church for the lunch after the service and from that point he has not slowed down..... As you can tell... he does not like to be left out of family things.... and since "house arrest" will start soon I want him to be included as much as possible ---

He asked me yesterday if he had to go to the doctor today and I said no... he was so excited he had two days off!  We will go on Monday to check and see what his counts are and I am assuming we will start the daily shots to boost his white blood count.  I also will be emailing NYC to see what the "plan" is for the next step of treatment.... I am ready to go to NYC... we have not been since the first of May.  Hopefully we can get a plan set and going so we can get back before school starts.... I want him to be at school on the first day... I hope I will be able to say we have a date of departure someday next week.  I know it wont be in the next week or so because we are not going to travel with low counts.... but it will be soon after --

Today we went to Grace's soccer game and Jeff and Grier met us later in the day.... He loves being out there.... even if it is 100 degrees.... On the way home he told me he wanted me to sign him up for soccer--- and he wants to pick his friends that are on his team.... hmmm... never heard a request like that before! I am a little nervous about signing up until after NYC-- Did that last year and only made it to the last game....  It would be cheaper to just buy a jersey online :)

Other than feeling well and trying to play catch up at home -- we are hanging in there--  Someday I am going to take the time to write a blog about all the crazy things Grier comes up with---  I am thinking he might be ready to Make-A-Wish--- So far we could give him every HOT Wheels Car and Monster Truck he "wished" for---Now He wants Jeff to get a MUSTANG---- which cracks me up---- and when he spots one on the road he goes nuts... I told him he could not drive until he was 16-- and he said I don't want to get my license .. I want you to drive me around FOREVER~  He is also really into fighter jets now-- he has a costume picked out for Halloween and keeps asking "if Halloween is close?" I guess it depends on who you ask... the retail world or the real world!  Yeah I know these are not wishes for make-a wish...... but he is getting closer to figuring out what he likes.... He certainly is having fun being "6" and knows so much more than when he was "5"--- We were talking about his birthday party... yes.. it has not been done yet...hopefully before school starts... it would be nice to get a plan from NYC-- do the first treatment... and CELEBRATE big before kindergarten starts----

This has been a crazy summer... it is going by quickly... I would be lying if I said it I didn't wish Grier was in camp, going to the pool ( yes.. we are still members of OP~ just don't get to go much) and my biggest worry was "who is going to be his teacher".... but Grier is still smiling and not complaining  so crazy is the way it is going to be for awhile..... and the PTA, pool and everything that I wish I had time for can wait----

Thanks for the continued support... I was surprised about how many people still read this blog....
Maybe next week when we are here on house arrest I will update pictures....  I need to get our wii fixed before next week too--- or it will really be a long week..... so many wishes are in this post.... but my wish is for the "nutrepenic fever" to stay away so we can skip another long hospital stay.... We have a 20% chance that this will happen -- I have not cared about odds yet..... so surely not going to start this week!

I am still recovering from the late night last night here in room 1--- Grier was WIDE awake at midnight.... He had a very very busy day.... By 1:00am it was time to wake him for the last urine collection and we could not get him to wake up----well... he was standing but sooooo sleepy that we could not get him to cooperate.... So, we waited another 45 minutes and he was not in the deep sleep he was in so he was a lot easier to wake up----  From 1-5 we enjoyed the humming noise of floor polishing and lots of conversation and smells.... lovely!   It was a really long night --and a very early morning.... Grier woke up before 7 ready to get out of bed.... and HUNGRY :)---- He was up before food service came in today!! The rest of the day went well--- he is still not vomiting but he has slowed down energy wise... but he may be exhausted from  last night... you never know.  I know I am...
IN 30 minutes, Grier will be done with chemo for today..... he has had 7 hours today alone.... Looking forward to tomorrow because he will only have a 1 hour infusion and then if all is still good we can go HOME-   Grier's initial excitement about the hospital stay has worn off--- he said a few times today he was BORED--- I am not sure how he was bored because he was entertained all day by my mom and me all day- We have played lots of card games.... built airplanes... and a Lego car---

I am going to get a quick nap before if it "pee time" again---- Grier is sleeping really well so tonight may be a bit harder to wake him up....

Hopefully the next blog update will be from HOME----

NEWS from ROOM 1---again :)

Our weekend had some up  and down moments but it turned out to be a nice July 4th --- The MRI was the highlight... of course :) We had a great time on Saturday and Sunday with friends and fireworks.... and Grier lost his "first tooth" on July 4th....

Sadly, Jeff's mom, Mary Christenbury died on Monday the 5th... surrounded by her family at home after a long fight with cancer. She will be missed but we are happy to know she does not have to be in anymore pain or discomfort.  http://www.hankinswhittington.com/sitemaker/sites/Hankin1/obit.cgi?user=226614Christenbury

Yesterday was tough as I had to break the news to Grier that we were having a sleepover at the hospital.... I expected the worst reaction but Grier said OK...  & can we pack right now.....? Never asked why...  or how long????  He just wanted to pick his baseball shirts to wear ( and he picked enough to stay here for a few weeks)--- Not the best week to live separate lives again... but after that reaction I was not dreading it as much.

Today we went to the clinic to check in and then we walked over to LCH to be admitted.... sounds funny, right???? YES.... it is crazy!  Chemo started around 2-- I think that was the goal time.... yes .. we got here at 9 something but I was told a realistic time to start would be 2--- HA! Grace & Hayes joined us during the check in process.... and hung out for the day... we watched movies, had a visit from Homer... and just hung out.  Not a bad day... just not the ideal place.... no one wants to spend time in the hospital...
I can say that Grier has finished his first day of his 11th week of chemo...... really... I am not kidding he has almost had 3 months of daily chemo....   hate that stuff.... but it is the only choice..... He is still in a very good mood.... actually just sent the Nurses Aide down for "soft" bacon at 10pm----  and wanted to drink the YoBaby I brought him for tomorrow morning...... I just hope we make it through the night without vomiting ..... not much to ask right?  I also hope that after midnight he sleeps and does not wake up to pee... but after all the post hydration fluid he has had I am doubtful that will happen......  :)

I am hoping he gets discharged by Thursday sometime... that is the plan right now..... We will still have to go to clinic Friday morning for an hour of chemo.... and that will be it for week 11----

I will update as we know more details of the week---- goodnight from room 1--- I am not sure if it is luck that we have almost spent over  a month in this room since May.... or what???? It is beginning to feel like home :)---- I love the neon blue light and the neon lights out my window...... !!!!  Grier is very comfortable here in his very own man-cave~

HE did it :)

Grier did an amazing job staying still for his first MRI without anesthesia..... I thought it was going to be a little "iffy" at first because we had some unexpected procedures..... ON Friday we went over to the clinic to have Grier accessed by our nurse -- she is very good at it and this is something Grier hates.... so I did not know who would do it on Saturday in an adult area... Grier was pretty funny as we drove over there... he said... MOM- I just had my port taken out yesterday and why do I need to get another in today.... We should have just left it in!--- Yes...so true if we had only known he needed an MRI :) Anyway... all went well at the clinic and Dr. M even gave him 1 ativan to try to make him sleep and relax.... just in case we needed it....

When we arrived on Saturday-- NO one was there... that is the ticket... get things done on a Saturday before July 4th~  anyway after I filled out all the papers... they checked us for metal on our clothing... and then I told the RN he was already accessed-- She said... Y'all are really prepared!!! Yes... We try to be so there are no surprises.... She left and the MRI tech came in to share some bad news--- his port/needle would have to come out because the powerful magnet in the MRI might burn his skin --- That was a little hard to argue about -- so the RN came in and said she could do an IV so they could put the contrast in his arm... LOTS of TEARS and that point---- and he said MOM~ you did not tell me that part..... !  The Tech was great got him side tracked and he calmed down a little-- I asked if she thought I should try the ativan and she said yes.. it will make him sleepy.... so he took it and then we walked in to tour the MRI machine.... Grier is not a fan of loud noises and MRI's sound like a jack hammer so I was getting more nervous as we stayed in the room.... He seemed ok--- He got up on the table and then she show him the Helmet his head had to be in--- more like a cage--- it had a mirror that he could look up into and see me-- He did fine... with all that-- I was standing by his head.... not talking because we all had earplugs in and he could not hear me if he tried....  As I was standing there waiting for her to finish getting him ready I felt a tug on my shirt... I thought it was the RN... but nobody was there.... it happened again and them I realized that magnet was pulling my bra~ NICE---- so I asked told the tech... of yeah I do have some metal and she laughed and said it would be ok-- She started the first set of scans and all I could see was Grier two eyes looking at me through the mirror.... he looked fine one second and even gave me a wink but then I could tell tears were coming .... he calmed down and we proceeded--- 45 minutes later and an IV contrast injection he was done and ready to go--- NEVER falling asleep-- HA! He must have a high tolerance for sedatives....

He was so ready -- he almost jumped off the table.... and we left---

Last night we enjoyed some fireworks with friends... and will do the same tonight.... Probably even more so now that I just got a call from Dr. M that said Grier's MRI is perfect.... He said that we should come to the clinic on Tuesday to start the process of being admitted to the hospital for 4 days of high dose chemo...

Happy 4th to everyone.... I will update more next week as he fights through another week of chemo-

The calm before the storm~

I knew I should have taken some time last week while we were at Topsail to update the blog and share about our relaxing week at the beach.  The week went by so quickly and as soon as we arrived back in Charlotte it was a distant memory... That is the worst part about vacations.....

Topsail did not disappoint last week.... the kids spent their days riding the waves and swimming, celebrating birthdays ( Anne, Grier, and Hayes').... and just hanging out.  That is one reason we like to go is there is not much to do other than enjoy the beach.  We also watched a lot of the world cup soccer games and the college world series ( Go Carolina Gamecocks-- if you haven't heard the story about Bayler Teal-- you should google it... really nice).... occasionally some really bad TV too-- like Wipe-Out.... Dinner was eaten around the table every night and Grier HAD to say the blessing every night.  He would wait until we all were quiet and holding hands before he would start.... it was the same every night... "Oh, the lords been good to me... and so I thank the lord for giving me the things I need the sun and the rain and the Appleseed....The lord's been good to me--" Yes... Johnny Appleseed ~ but this year I could not help but think he could be asking or complaining about all he has been through in the last month or really the last 3 years.. but he doesn't.... he just goes with the flow....

Our Topsail weeks have always involved lots of friends too.... and this year was no different.  Anne, Sawyer, Mac and Susanne made the trip for most of the week.  We love to have them around.... And on Friday, we had a visit from my college roommate, Kristie and her husband and son--- all the kids played well together and had fun riding their boogie boards.... We also made a trip to Wilmington.... the kids wanted to see UNCW so we walked about seahawk country for a little bit--- I am afraid Grier thinks college is all about the "apparel"..... He wanted to go really badly and I was trying to explain that it was not going to be that exciting.... MOM, I want to see your college!  So, he went for the first time and as expected.... he had BIG plans for the bookstore.... but much to his surprise the jerseys were non-existent and the ONE T-shirt they had in his size was NOT going to be worn by him.... just not cool enough according to him :) Don't worry he did not leave empty handed... he found a water bottle... and a sweatshirt... but he talked about how they did not have anything for him the entire time at lunch @ SALTWORKS and wanted to go to a different store!

I waited until last Friday to find out the plan for the week we returned.... and I thought for sure he would have started chemo last Monday since we had delayed it for a week to go to the beach (safely)--- but that was not the case. Our doc in NYC wanted to do an MIBG ( nuclear scan) to see how the ICE affected the spot on the hip.... That is a two day process at least... and I did not want to fly to NYC for one scan... if I had a jet in my backyard that would be a different story :) So, I made sure they thought it was OK to do this scan in Charlotte and it was decided it was OK.... that was the only scan they needed to proceed.  That was scheduled for Wednesday and Thursday of last week.... Grace was going to be going to tennis camp so the week was a little busy but not bad since I thought Grier was going to be IN the hospital for a few days getting chemo.

Grace had a fun time at camp with Hannah and Ben.... Hayes did almost NOTHING all week... is that what 13 year olds do???? And Grier and I shuffled between lots of medical appointments... He did get to go to a friends birthday party and it was nice to see him in his peer group again..... it had been a long time...

The MIBG scan went OK logistically..... he did really well spending a good part of two days walking all over CMC to get all the procedures done.  He did an awesome job of staying still on the hard table while the machine slowly scanned his entire body..... They ordered some extra pictures so it too almost 3 hours-- He impressed the radiology dept.  They said more than once that most of their Adults that come there for tests don't do that well without drugs.... and hardly any of the kids they have seen could have lasted that long.  He was just happy when it was over.... I was too because it mentally drains you as you talk, sing and do whatever it takes for 3 hours to make sure he is still and comfortable..... We sang the 12 dogs of Christmas over and over which seemed to entertain him for a long time... plus he got to watch a couple of movies during the scan.... but sometimes the scanner would block the screen so the singing would resume :)

Friday was suppose to be our "free day"--- That changed when the phone rang around 10a--- it would have been earlier but I rarely check my messages on my home phone.... ! So, when I was asked if I had gotten Dr. McMahon's message I knew we were getting ready for plan B!  He called to say that Grier's MIBGMIBG took so long) but the radiologist would like to do an MRI to make sure --- That is when all the planning took place--- He has not done an MRI without anesthesia before so the clinic was trying to get on their schedule.... that is a hard thing to do.... The first available appt was next Wednesday..... way to long to wait and not know a plan.  So I asked what the other options were.... 1) we could try to have him do it w/o anesthesia... 2) admit him and see if he could get it done w/ anesthesia quicker since he was inpatient.... Well.... after much back and forth between different depts... Grier is going to have an MRI today ( Saturday) at 1:30-- without anesthesia.... I am going to sit in there with him and hopefully the jack hammer noise will not freak him out too bad and he will be able to handle the noise and staying still for an hour as they scan his head.   The results of this scan are needed ASAP so we can proceed with treatment..... If nothing shows up he will have chemo next week.... high dose CTV (three chemo agents)--- if there is something we will have to regroup and decide what is next-

Along with all our personal medical drama.... our family is sad to tell you that Jeff's mom is ending her battle with cancer.  Hospice is caring for her and she soon will be out of pain and at peace-- As you can imagine the stress of all of this is a lot but we are doing our best to help the kids.... We also had a very close family friend that recently lost her battle with cancer.   We have had lots of talks lately about angels and heaven and living a good life...... Grier basically has said he does not want to get old.... he would like to stay 6 forever..... because he is not ready to go to heaven yet~  He always knows how to end a conversation......

So.... our topsail week was the calm we all needed to survive the storm that is coming again..... But we have proven time and again we know how to dance in the rain so I know that will be the case in the coming months.