Friday, August 14th-2/3's of a day from HELL!! The Recap. cont'd.

So I called Jenny back but she was not to be found. We decided I would shower while Steve processed the data points. During my shower, Steve came in and said "we have some decisions to make." He had spoken to Jenny and we were offered a neurological consult with Foreman that could perhaps negate the need for the MRI. As you can probably guess, I was not having any part of that. No offense to Dr. Foreman, but we need the peace of mind the scan would provide. Steve told Jenny that and she would call back to let us know if his consult was a prerequisite for the scan. Luckily (for them!) it was not. I spoke to Jenny later that afternoon and asked her to talk to Foreman and convey to him that we need him to take this seriously, to really give the scan some consideration because "this is not fun for us!" She heard me and told me that he was taking it seriously but the chances were so slight for Zoe to have a brain tumor. I told her that that information was of ABSOLUTELY no comfort to us whatsoever. We discussed details when we could expect to hear from Foreman and she ended the call by saying "I wish I had a valium for you or something!"

So since we had promised Zoe a new fish tank, we decided to distract her from her hunger (and ours) by heading to PetsMart around noonish. We spent time in PM looking at the aquariums and decor items, fish and birds. Zoe pointed out "Fluff" to us. He is her bird friend (imaginary) and was very beautiful. So we purchased our stuff and headed out on a long drive so Z could get in a nap before we arrived at the hospital.

So Zoe falls asleep within 10 minutes and once Steve got on the main highway to the hospital, my mind started FREAKING OUT. I was so, so scared. Steve and I talked about how hideous the flashbacks were and how worried we were for Zoe and her mental well-being before, during and after this ordeal. I cried and would have screamed if I could have. By the time we arrived at the hospital, Zoe was waking up and I had regained my composure. At the check-in counter we were told to have a seat on a couch in the airport-esque lobby. Since I had already gone through the check in process the day before, I asked if she needed my confirmation number to which she replied, "it just says for you to have a seat on that couch". So we did. Steve and Zoe went to view the ball machine and a lady came up to me and asked "what's the patient's name?" I told her and then I realized what she had said and went to talk to her and the woman behind the computer. I firmly told them to NOT say patient again around my daughter. "I am serious." They both agreed and looked at me like I had snakes in my hair. So we were then told to go to radiology across the lobby.

Upon arriving in radiology, I had to complete the same forms I have filled out for every one of Alex's MRI's and it was NOT fun!" I then went to go sit with Steve and Zoe. I tried to read a magazine, but absolutely could not concentrate on the words. I realized that my laptop was also not going to be a good distraction. Luckily about that time, our beautiful neighbor, Courtney showed up and we immediately headed out of radiology to look at the construction and to go to the gift shop. Since we had a pager this was not a problem.

Zoe ended up getting a lovely stuffed horse from the gift shop and I bought a scarf. Nothing like retail therapy. When we returned we saw Steve sitting just outside radiology. I asked him why he moved and he said "someone brought food in and sat it out right in front of our former location". I'm sure if they had known that there were kids that had not eaten since 8a that morning they would have been more considerate but nonetheless, we moved.

Next, I spent alot of time talking with our nurse, Erin, to explain words she could and could not say around Zoe. I also told her that we were telling Z that she was there for a shot and we did not want her to see any MRI machines. Erin then explained that there would be gas done on the MRI table and then she would receive the general anesthesia via IV. So that through a monkey wrench into our set up and we had to talk to Z about the mask. The next issue was the anesthesiologist himself, I had told Erin that we did not want to answer their questions in front of Zoe and here he comes, just comes into the room and starts asking questions. I ask him if we can talk outside and he accommodates my request, but only halfheartedly. He tells me they "HAVE" to ask us at the MRI door what procedure we are here for AGAIN, as a safeguard for Zoe. He suggests that STeve and I split up and answer this question, to which I agree. We are then asked if we want an oral med to make Zoe sleepy and loopy. We agreed since it would also act as a mind eraser of the events to come. So in all, Zoe had 3 anesthesia yesterday: oral, gas and IV.

Okay, so the oral med takes effect and time is ticking. Our 3:45pm MRI was not happening at 4:20 pm and Dr. Foreman only had until 6p to read the scan before departing for an out of town conference. So FINALLY, we get Zoe outside the MRI room and here we go again! Another nurse, starts asking me "so we are here today for a . . ." to which I immediately start shushing her! She was not going to be shushed and I had to just interrupt her and say "YES, we are here for a B-R-A-I-N scan". GEEZ!!! What a pain!

Okay, so we head straight to the cafeteria to grab some lunch (at 4:30pm) and not three bites into it, our pager starts to go off. A brain MRI takes 30 to 45 minutes and my heart immediately sped up. I grabbed my stuff, told Steve and Courtney "this is not good!" and nearly ran back to Radiology. Once there, no one was inside the patient lobby to meet us and a nurse leaving had to call and find out why our pager was going off. She explained that "it was a mistake". Again, GEEZ! (just to keep this post family friendly, we'll use geez instead of my actual words!) So after our hearts returned to normal, we tried to eat our lunches/snacks.

About 5p, we were paged to come back to see Z. She was OUT! The nurse took out her IV hoping that the process would wake her up but it did not. So I asked Steve to go get our stuff and Courtney from the lobby. I had left my phone in the lobby and wanted to have it to speak to Foreman when he called. Steve was gone for a very long time and time was passing so I went to find him. He was in the lobby and had been locked out. So I got my phone and sure enough, I had missed the call from Foreman. So I can't call voicemail fast enough as we are walking back down the halls to Zoe. Finally, I hear these words spoken in a very tired, English voice "Zoe's scan is clear". I told Steve and Courtney and hung up the phone. I guess I pressed "erase" instead of "save" because I never got to hear the rest of that message. It did not matter, I just wanted to get the F out of that place. We tried again to wake Zoe but she was not having any part of it. Finally about 30 minutes later, Zoe wakes up and we head home. We have milk and snacks for Zoe and the nurse gave her some animal crackers that she would not share on the ride. We then took Zoe to her preschool's first "Parents night out" of the summer. Zoe was still too wobbly to walk so I had to put her on a blanket in the backyard with some of the other kids. It took me about 15 minutes to get out of there after cutting off her bracelet and reassuring her that she would be okay. It was Shannon's tale of ice cream and glow sticks that finally convinced Zoe she wanted to stay. So I joined Steve in the car.

We headed straight home. Steve needed a nap and I needed a beer. I made some phone calls and then woke Steve up after an hour or so. We then headed to our neighborhood Sushi place and had a wonderful dinner. I asked Steve "what's next, dancing?" and he said he had a surprise for us. We were headed to Inspiration Point!

If you have not been to our town's Inspiration Point, you need to go. Don't even think about getting some some there though. There are video cameras everywhere and they make sure you know so! We were there for the views and the walk anyway. On our walk, we saw our city from many new vantage points. It was a lovely, clear summer evening and truly lovely. We both were completely flabbergasted that in the 8 years we have lived here, neither of us had ever noticed the 3 or 4 story tall, bright phallic symbol in our view. It was VERY phallic if you get what I mean, and it was lit up with alternating orange and blue pulsating lights. I swear I have seen smaller versions in certain stores! After a hearty laugh, we decided it was part of the children's area at our neighborhood amusement park! Just makes you wonder, what else have we been missing both in our landscapes and our lifescapes!

Thank you and God bless!

G

Friday, August 14th-2/3's of a day from HELL!! The Recap.

So I just have to get this down before I forget the details of yesterday. I woke up at 7a and no one else was awake. I went downstairs to wake Steve after making the coffee. I made a stop at the "facilities" before going to wake Zoe and I hear Steve "NO WAY, FU**, FU**!!" I'm mortified and come out saying "What, What, What is it!". Steve's response "We have NO EGGS!" I knew at that moment Steve was needing to be pissed at SOMETHING! So to de-escalate the problem (you see we promised Zoe a big pancake breakfast because her first and only meal until evening would need to be eaten by 7:30am, and we wanted it to be big), I responded "Oh well, we can do waffles." Since it was 7:16am I thought that would work. But Steve's glare was very intense and I felt his displeasure. He glared at me as he made his way out of the kitchen and downstairs. I went to wake Zoe and I got her to the breakfast bar. I asked her if she wanted waffles or cereal and she chose waffles, so I started to prepare them. As I was doing this, I looked inside the Bisquik box and saw some dark spots. Upon investigati0n, it turned out the mix had weebles so I threw it out. Next thing I know, Steve is walking through the front door with a carton of eggs. My heart sank to have to tell him about the weebleful Bisquik and his glare returned quickly! So we finished breakfast and I asked Zoe if she wanted to go to Kidz Club at the gym with me? She put her finger on her chin and looked to the sky and said, "well, maybe I want to . . . GO TO KIDS CLUB!!! I laughed of course and we proceeded to get to the gym.

After a great workout, the instructor, Angela came up to me after I had retrieved Zoe from the Kidz club room and asked "are you okay, you seem a little down today?" I told her to speak to Joshua or Chris to get the details but told her it has to do with Zoe so I can't speak about it here. She agreed and I followed Zoe out of the building. As we headed to the car, I looked over the parking lot to our new liquor store. I considered going to get the beer now or later. I decided to take the "green" option and we just walked across the parking lot into the liquor store. Now you have to know that I really like this new liquor store, but I have been quite vocal about "not being happy" when they run out of Sam Adams Light Beer 12 packs and then sell out of the 6 packs by Saturday afternoons. So I see the gentleman, that usually gets the brunt of my discourse as I walked in the door and said across the store (since we were the only ones there at 10am) "Am I happy?" We both then looked to the beer cases and I saw it there, glowing like a beacon, a 12 pack of SA Light!!! I WAS HAPPY, IT WAS GOING TO BE A GOOD DAY!!! As I ran to the precious box, I saw my 2nd favorite beer of the summer, Oskar Blues Brewery's "Mama's Little Yella Pill" so I grabbed a six pack of it too. We paid for our purchase and I filled out a form to get on their email list then Zoe and I walked back across the parking lot which was filling up with the yoga class crowd carrying my treasure proudly and boldly! I was ready if anyone wanted to say something to me!! Just BRING IT ON! I had my "Steve" mode all planned out!

So we get home and there is a message on the home phone. It is Jenny M. from Dr. Foreman's office (Alex's pediatric, neuro-oncologist) saying that "Dr. Foreman wants to see Zoe at 2p today and to call her back asap and that she will call me back too." So I played the message for Steve who was in the garage building Zoe's new bed. We both experienced a spike in anxiety and despair. I think we cried and I know we hypothesized "why would he want to see Zoe?" I told Steve there was NO WAY Zoe was going to see him. Primarily because she remembers Dr. Foreman, he is like a croc wearing Ringo Star but smarter. He is a distinctive character!

Okay, I have to take a break. We are going to go purchase a bike "tag a long" for Zoe. More later!

G

Z is OK!!

Thursday, August 13th - Zoe has an MRI tomorrow

Hi All,

So Zoe had her first occupational therapy appointment on Tuesday. At the end, the OT asked me "have you noticed her head tick and tilt to the left?" At which time, my heart sank and my guts spilled onto the floor. If you recall, one of Alex's presenting symptoms was a "head tilt to the left". After I asked her to be sure and she was. I asked her what I should do and she said to "have it looked at as soon as possible." So I came home and emailed our pediatrician, Dr. Jody. She called me back and said she would see Zoe this morning for a "check up" and schedule an MRI for today. Well, of course, no one contacts us all day yesterday about any MRI so later that evening we found out it would need to be on Friday. So we all were at the ped's office at 8a this morning and Zoe has grown 3/4 of an inch since May and her eyesight is the same. Other than that, the doc did not see anything and Zoe would not complete the dexterity tests like, touching her nose then the doctor's moving finger. Jody did say that "OT's are so much better at seeing these things" and the we would go ahead with the MRI for everyone's peace of mind. So she called and it is scheduled for 3:45pm MST tomorrow.

Yesterday was a day spent battling fear, logic, anxiety and did I say FEAR!!!!! Luckily Zoe was able to go to her friend's house for the day and Steve and I had time to talk, cry, strategize, pray, cry and plan. I have been asked "is there a tilt" and I say "yes" there is and Steve says "no" and Dr. Jody only saw it at the end of the visit. I am trying so hard to put my powers to good and think positively but PLEASE do not tell me "the odds are in your favor" because that is ABSOLUTELY of no comfort to me! So, I have been to the gym, drank a few beers and held my baby tight and worried myself almost sick.

Tomorrow, Zoe will not be able to eat after 7:30am. I will be at the gym at 9a and we will be at TCH at 2:30p for the scan. We have no plans to tell Zoe much tonight. Tomorrow it will be that we have to go to the hospital and she will get a shot (can't say "poke" because that was Alex's term.) I have to keep reminding myself of that.

So I have members of my tribe showing up tonight and if you are part of that group, you are welcome too! Pray, PRAY and PRAY again!! My wish is that tomorrow we are all free of this all too well known anxiety and excruciating fear.

God bless!

G

Alex, please dear boy, look after your baby sister tomorrow and give her peace. We love you and ache for your smile.

Zoe Grace - A Kid's Kid, August 7, 2009

As much as I wish Alex were alive and well, I wish you could know Zoe Grace. She is an absolutely amazing child. Every week, I hear "what an imagination" or "what a beauty". People just have to comment when they experience the ZG. She has a wonderful energy and her imagination is AWESOME! So far we have met Lucky, her horse, Fluff, her bird, and Bolt, her dog. I wish I could remember the name of her "inside" chipmunk. Zoe makes friends wherever she goes and has been likened to "Max" from the classic tale "Where the Wild Things Are" which Steve and I agree is a very good way to describe Z.

Zoe still misses her brother, as do we all. And there are times when I can feel Alex's absence in Zoe's playtimes. It is heartbreaking to even think about what she has missed out on. To put it in perspective, I was told "You have to remember, Zoe picked this life so don't pity her, rejoice in her." Someday, maybe we will all understand. But as I have said before, there is no answer to the question "why?" that would be satisfactory so therefore there is no "Why?"

Okay, so back to the living. We have had a busy summer and I am not ready for Fall. I was in a JoAnne Fabrics at the end of July and was absolutely taken aback to see the employees putting out Halloween decor. It truly struck me to the core. "I'm not ready, NO, NO, NO!!!" I swear I won't return to any hobby, fabric, home stores for a while.

I have used the summer to improve myself and hopefully build up stores of energy, wisdom, and strength to enter the Fall and Winter seasons. I am still working out and losing weight. I am physically stronger, more fit and have more endurance and stamina than ever before in my life. Quite a feat at 43 years of age. I am addicted to the endorphins and if you don't have them in your life, I STRONGLY encourage you to go get some! Endorphins make everything better, even the bereavement of a child like Alexander. It took me a year of intermittent working out to get them but WHOA when they become a part of your life, you are truly LIVING!!

So here are some pics of ZG. I hope you enjoy them and enjoy the last month or so of summer. You will never get this moment back again, so make it worth your while.

Much love and God bless,

G