Friday, March 30th

Well, today has been a day of information gathering, meetings and processing another "new normal". Tuesday Alex will have outpatient surgery to swap his mediport for a Brovia (external) port. Wednesday he will return to the Radiation Oncology clinic to be fitted for his mask, catscan and perhaps another MRI. Radiation treatments will start the following week.

I went to the office today and it was harder than I thought to talk about Alex there. Again, this has all happened so fast. As I told my boss, as of Monday afternoon we thought Alex was on his way to wholeness and well-being. Anyway, everyone was very supportive and I have been given a month of leave to be with Alex and Zoe and take care of things. I am so appreciative to everyone at the office. The bosses for giving the time off and the staff for filling in my shoes and the judges for their continued support and understanding. Thank you all, I really do miss being around such wonderful people.

I'm exhausted mentally and physically. I still don't feel well and sleep is not that sound either since Alex is choking more and wakes up screaming. He has become very snuggly lately. He is not keen on the mask concept. He said he did not want to wear the mask because he needs to eat to keep his weight up. We then explained that he did not have to wear the mask anywhere except during radiation. He felt better about that, but you could see his anxiety level raising until he and Zoe started playing tag around the clinic's exam room.

Okay, well it is bath night. I can't remember the last time we bathed the kids. Oops!

God bless.
G

Thursday, March 29th

Okay, well you guys are good! NO SURGERY!!!! Dr. Handler said it made no sense since the treatment would be the same - radiation, so why jeapordize Alex's life and put him through a very painful operation. YEAHHH!!! I am sooo relieved!! God bless you all for your prayers.

Okay, here's the bad news, you had to know that there was another side to this tale. Well, since "it" (assuming it is a low grade tumor that is not responding to chemo) has grown during chemo we will go to plan B; "failure treatment for low grade astrocytoma". That means surgery to swap his mediport for an external port. Conformational radiation and chemo treatments five days a week, for six weeks at the Fitzsimmons hospital under anethesia. No school during this treatment and after six weeks, treatment is done. Fini! The next 10 to 14 days will be spent planning, organizing and arranging for a lot to happen. Steve and I really only have an inkling of knowledge about what the next two months will be like.

The other bad news is that radiation only works 50% of the time. And if it does work that there is a 3-4% chance that radiation will lead to a fatal secondary malignancy.

So when I asked Dr. Foreman "what do I pray for?" He said, "pray that radiation works." So that is my request to you. Please pray for Alex, for Zoe, for Steve and for me but most of all please, please, please pray that this treatment combination works and gets rid of these nasty tumors in our beautiful boy's big brain!

There are several side effects to all of this but we'll deal with those later.

Okay, I have to say I feel better. At least we have a gameplan and that is HUGE. I know what to pray for and that is HUGER!! (I know, huger is not a word!) Steve and I have decided to spend a few days processing before we make any decisions about jobs, time off, etc. So much to be done.

I thank you all for your prayers and wish I could hug each and every one of you. I have always believed in the power of prayer, and will continue. Thank you, thank you, thank you.

You may notice that I changed the post's layout and have allowed some advertising on this blog. Please don't think that I am taking advantage of Alex's situation. It is simply a means to get some extra income at a time when it is needed and would greatly benefit our situation.

God bless! Have a wonderful day and may you all be safe during this stormy season!
G

Wednesday, March 28th pt. 2

I can't sleep. My mind is racing even though I am tired and yawning as I type. Our consult with the neurosurgeon is tomorrow morning at 9am. He will tell us how secure he is with doing another biopsy without losing Alex's life. As I said, this new IT is centrally located on the brain stem so we know surgery is very risky already. What if they can't operate and get a biopsy? Do we start radiation? They told us when deciding about the first surgery that misdiagnosis/mistreatment could severely affect survival rates. They also told us that radiating a JPA tumor (#1) would "anger" it. So where does that leave us?

I don't even know what to pray for right now.

G

Wednesday, March 28th

Okay, it's official. I am having a terrible, horrible, no good, very bad day!! I can't actually explain which issue could be causing this. Could it be the unbearable stress over tomorrow's consult with Alex's doctors; or could it be that everywhere I look there is housework that needs to be done or a project that needs to be completed; or perhaps it could be that I still feel sick and just want to sleep. Oh, I know, it's financial worries caused by corporate red tape and more red tape. Or maybe, just maybe it's that time of month! Wow, which to choose, what to think about, what do I do!!!!

I can't cry because the kids are up. I can't scream because it would scare the kids. I can't take action because physically I just don't feel like it. And I can't shop because there just aren't the funds in the account. AUGHHHH!!

I thought this would be a release but it's not. Is it too early to start drinking? It's noon somewhere right?

God bless,
G

Tuesday, March 27th

Thank you all for all of your prayers and well wishes. Today's scans were good and "not compatible with a high grade tumor", which would have been fatal. So that is GREAT news! Also the spinal scan showed everything is okay there as well! Unfortunately, we still do not know what IT is! Since low grade tumors and normal brain matter are so similar; it is very difficult to tell if this is another low grade tumor that is growing during chemo, which would lead to radiation. Or it could be brain swelling due to the chemo. I don't think we discussed what would happen then.

The next step is to have Dr. Handler, the pediatric neurosurgeon, look at the scans, assess the technical difficulty of getting a biopsy and discussing that with Steve and me on Thursday.

So, I have to say my prayers for today were answered in the best possible way. I am pretty numb, exhausted and ready to eat the pizza Steve just ordered (our favorite comfort food). So I bid you ado.

God bless, Keep those prayers coming!
G

Monday, March 26th

So this is the blog, I don't want to write and you do not want to read. Dr. Foreman's office called this morning at 10:15a, right before we were heading out for a sick appointment for me (gotta a flu or something). They wanted to schedule a time for Steve and I to come in and meet with Dr. Foreman (Pediatric Oncologist). We set a time for noon. So when Dr. F saw us, he asked us how Alex was doing. Besides the facial paralysis we really have not noticed anything getting worse. His assistant, then took the kids to the waiting room to play and he showed us Alex's MRI from Friday. He said the doc that looked at it was correct to say there was no change in the JPA tumor that he is being treated for. But he also said with experience you learn to look at the scan to see what it shows otherwise. Well, since January a new growth has shown up on the scan. It is centrally located on the brain stem and is not imaging the same as the JPA. Dr. F said he has never seen a ganglioma do this before and therefore can not tell us what this means. The plan is to have a spectrograph (special MRI) done asap to get a chemical footprint of this tumor. It is a very tricky MRI to do successfully and if it does not go well or if it does then another brain biopsy may need to be done. If this needs to be biopsied it will be an even more dangerous and difficult surgery than the first one since this is located directly on the brain stem. I just found out the MRI will be tomorrow morning at 8a.

We feel like we are back at the very beginning of this ordeal when everything was unknown and all we tried to do was not go crazy speculating on the what ifs. All I can ask of you is to pray for my dear, precious, beautiful boy. Don't let this be another tumor that can not be treated. The doctor speculated that we may end up doing chemo and radiation at the same time. I just want Alex well and to watch him grow up and get to be a kid. Is that too much? He is my life, my love, my baby!! I won't give him up without a fight!

Alex asked his dad why he was crying. Steve said he was having a bad day. Alex asked why. Steve said because the bump is bigger. Alex said, "Ahhh man, I have to fight it all over again". This is the spirit I need you to pray for. For me, Steve and Zoe. Give us Grace, hope, LIFE!!

God bless,
G

Friday, March 23rd

Good Morning,

Well, we survived the Mouse! Just barely, but we made it through. Last Wednesday was strictly a travel day that started at 7:30am when the limo arrived. It was a fun ride to the airport, but that was probably the last bit of fun until we arrived in Orlando. The flight was long and since Zoe is under two, crowded! Upon arrival, we were greeted by a volunteer from Give Kids the World resort. He had a Smartecart for us and took us to our rental car, which was too small to hold our luggage and double stroller. So we ended up with a minivan, which was a Godsend! We loaded up and headed for the hotel. Upon arrival, we were given a brief orientation and shown to our villa. It was a very nice two bedroom, two bath (w/ jacuzzi tub) duplex with a cozy porch furnished with rocking chairs. We immediately ordered the free pizza and started the unpacking process. My sister had arrived a day prior and was at the beach when we arrived. Her clan ended up at GKTW later that night and Alex and Zoe loved seeing their cousin Evan. They even had their first sleepover! It was great.

Okay, day two. Magic Kingdom. Spring Break. Party of eight. Need I say more? Let's just leave it this way; I did not enjoy the Magic Kingdom. I don't do crowds well and when we finally made it through all of the shops to the kids' rides, Alex did not want to ride any of them. He just wanted to stay in the shade. I proceeded to lose it! My dreams of seeing Alex smiling and going from ride to ride with joy and freedom from his ills were dashed and I cried and cried. It was not until the Birthday party with Pooh and his friends that I was able to get myself together. The rest of the day is a blur. But I know I have never been so glad to leave an amusement park in my life!

The rest of the vacation included a day of sleep (Monday); we were all completely worn out;Pirate dinner theather, WD's MGM studios, Universal studios and Universal Island of Adventure and WD's Animal Kingdom Kilimanjaro Safari. Alex's favorite parts were seeing Lightning McQueen at MGM, as well as meeting all of the characters. He met Pooh, Tigger, Buzz, Green Army Man, Woody, Spiderman, Lightning McQueen, Tow Mater, Captain America, Wolverine, Jimmy Neutron, and Spongebob Squarepants.

I think Steve's favorite part was spending the day at Universal with his friend Scott and his two boys, Mattie and Mitch. They drove two and a half hours from Boca Raton to spend the day with us and it was great! We had burgers at Margaritaville and rode some great rides. My favorite was probably the time we spent with my family outside of the parks. Alex, Zoe and Evan were having a great time together and Alex really perks up around other boys his age. He pretty much smiled constantly when with his cousin or Mattie. That was precious!

The resort, Give Kids the World, is a magical place in and of itself. They have a movie theater, ice cream palace open from 7:30am to 9pm everyday, putt-putt with huge dinosaurs; heated pool with wheelchair access; restaurant that served all meals at no charge; and last but not least a magic castle with a carousel. Inside the magic castle were 80,000 stars representing all of the children that have stayed at GKTW. Alex's star was added on our last day. The magic castle also houses the magic pillow machine that with much ado snorts out magic pillows for the kids. Every day the kids received new toys in the villa and there were planned activities everyday, all day. It really is a very special place. I feel so blessed to have been there. Another huge gift was that Alex was given special passes that allowed him/us to go to the front of any line for any ride or show. He did not have to wait in long lines, which was such a treat! Every character that saw him also spent some extra special time with him. Overall the trip was wonderful for the kids, which is what it was designed to be. I have to say that Make-a-Wish Foundation and Give Kids the World really know how to fulfill children's wishes; I highly encourage everyone to support these groups.

Well, we got home late Wednesday night. Had chemo Thursday morning and an MRI today. Unfortunately, the MRI showed no change in the tumor which is normal but still disappointing. We are still very tired and I have a stack of mail yet to go through. Roxie had a great time with our friends in Erie. I hear there were some potty training issues but overall they enjoyed having her around. I know she enjoyed being around a family rather than a kennel. But I think she may be slightly upset with us. When we arrived home from the hospital this morning, she had eaten a cushion on our outdoor sofa. I think she needs a walk! I'd take her but Alex is lounging and Zoe is sleeping.

Okay, one last thing. Zoe is one of ten candidates for a local modeling contest. It is really not a big deal, but we still want her to win. So if you are so inclined please go to the link below and cast your vote for #6! She's the one in pigtails!

www.cephotos.typepad.com

I hope everyone is enjoying Spring! It sprung here while we were gone and seeing the little buds popping out is wonderful! I love living here!

Okay, tah tah for now (ttfn) as Tigger would say!

God bless!
G

Monday, March 12th

Good Afternoon,

Well it is incredible what you can do when you are not in pain!! You should have seen me Friday. I cleaned up the front and back patios, set up the patio furniture, moved the kids play area out and picked up all of Roxie's poop (sorry, tmi?) Steve came home and I was bounding (yes! bounding) down the stairs to do laundry. I thought I was just having a really good day and enjoying the beautiful sunshine and warmer weather. Steve pointed out that being pain free probably had as much to do with it as anything. Well, just to finish the topic, I spent over $100 on some great shoes, got more ultrasound today and purchased some foam cushions. I am ready and set to walk around Orlando for five days!! Wish me luck!

On a completely different topic, I recently joined a neighborhood online community. It primarily consists of neighborhood moms posting information on all sorts of things from playdates, consignment sales, recommendation for services, list of great restaurants, to warnings about strange persons in the area. I love it. Well, last week a mom posted a plea for a one month rental. Long story short, we will have a family of four in the apartment for at least one month, maybe two. It works out as a mutually beneficial arrangement. They get to stay in town and together while finding their next home; and we get some extra income. We signed a lease today and move-in is right around the corner! I am happy to be able to help out as well as to get a break from the financial stressors we are under. Those hospital bills just keep on coming!

Okay, I also have to say that the massages were wonderful, absolutely fantastic. Steve said it was the best one he had ever had. I was wrong when I stated it was his first, obviously. Unfortunately, I woke up this morning with the same knot in my shoulder. AUGHH! I guess you can't have it all!

Well, I just entered the kids in a photo contest. I have downloaded some of the pics for this post. I don't really care if they win, just thought it would be fun.

Alex and Zoe are doing very well except for the lack of sleep caused by Daylight Savings Time change. I hope we get this all worked out, but I'm pretty sure our sleep schedules will be completely turned upside down in Orlando. Oh well, this is a once in a lifetime event, I'm not going to fret over bedtimes!!

We are all so excited about the trip. I can't wait!

God bless,
G

Thursday, March 8th

Okay, it is official. I need a vacation! I just woke from a nap at 2:41 and realized that I had missed Alex's time for pick up at the school. I frantically rushed into the nursery to get Zoe and saw Alex in his bed sleeping! Then I remembered that I had picked Alex up and we had lunch at McD's then everybody went down for their quiet time. Well, relief does not quite describe how I felt!

Yesterday afternoon I got a chill in my bones that no amount of blankets could warm. Turns out I was running a fever. I took some Nyquil when Steve got home, but that did not help me sleep. Steve is a loud cook when in the kitchen. So I got up and laid on the couch for a while. I had not eaten yesterday so Steve made some soup and sandwich for me. The soup made me sweat but tasted yummy. Needless to say, I was pretty worthless last night.

I woke up feeling pretty crummy from such a bad's night rest. I was covered in sweat from head to toe. A shower never felt so good! I took some Airborne and IB and got Alex to school. Then I had a much needed appointment with a podiatrist. He was able to relieve my heel pain and made me a set of orthotics as well. I told him I'd take a whole new pair of feet if he had them. I'm just ecstatic not to be in pain (well at least not in my heel). Now I need to get rid of this knot in my right shoulder!

Well, Alex was taken off the oxygen Monday. He seems to be back to his old fun, happy self. We bought him a very good pair of shoes this past weekend and he seems to be doing well with them. He is disappointed that they don't light up though!

Yesterday, Zoe had her playdate with Melena in our home. We all went for a walk (girls in double stroller) with Roxie around the lake. Then they played for a while at the park. The next activity was to destroy the play room which is what a play room is for I guess. I then took the girls outside and set up the play set for them. They had a blast and loved the sunshine. We are having beautiful weather right now and everyone is very grateful for it. I think Zoe and Melena are going to be great friends. Tomorrow Zoe will be at her house for the morning while I go to work and Alex is in school. I am so grateful I don't have to put her in that child care facility that was subpar to my standards and going to cost us more than our budget could handle. Thank you, thank you, thank you dear Lord!

Well, I am going to go try and get my wits about me. Wish me luck!

God bless!
G

Friday, March 2nd

Funny thing happened on way to the office. I saw a bumper sticker that said "Diva of the Dark Side". It was on a minivan driven by a very somber looking young woman. Someone should make a sticker that says "Diva of the Minivan"!

=0)

I know, you probably had to be there. It made me laugh.
G

Thursday, March 1st

Hello. Well the retreat was a success and nice break. We bonded, learned, dined, wined, danced and even karaoked!!! I had a beautiful suite at La Posada in Santa Fe with a small fireplace that was blazing every night. Steve, Alex and Zoe sent me a beautiful floral bouquet the first full day I was there. I felt so very pampered and special. Unfortunately, I had a lot of trouble sleeping. Imagine that? The first time in YEARS that I have an opportunity for uninterrupted sleep and I can't do it. I know this sounds weird, but I usually fall asleep to Steve's nocturnal songs (snoring) and without them I was tossing and turning and just not sleeping! I guess we really are made for each other!!

Well Steve did great with the kids by himself. They had dinner with friends Friday night and brunch with neighbors Sunday morning. I called alot and Alex was fine every day except Sunday. He could not talk to me on Sunday, because he was crying for me too hard. =0(

I almost gave up my seat on the airplane home but fortunately for everyone that did not have to happen. Alex was happy to see me, but also happy to get all of his booty from the trip. Zoe was happy to see me too! And needless to say, so was Steve. It was nice to be missed and very nice to be home.

This week has been a good one. I met another mom that is willing and able to child swap with Zoe and me each week. Zoe started a tumbling class at a neighborhood center and hopefully she overcome her newfound shyness and enjoy the classes more each week. Yesterday, I took Zoe to the doctor. She had a fever the night before and they found an ear infection. I think she is starting to feel better and we are all very happy it is nothing more than that.

Alex was supposed to have chemo today, but since his pulse/ox was low, they did a chest Xray and found that the pneumonia in his right midlobe has worsened. So he has been put on oxygen and we are to begin "pounding" his back and ribs to loosen him up. We knew something was up and I told the intake nurse that his pulse/ox were probably going to be low. He had a very hard time at PT and OT this week. He just had very little energy for any extracurricular activities. Hopefully we will get this resolved in the very near future! Wish us well.

So we are 16 days from our Make-A-Wish trip!! I am starting to get very excited about this and so is Alex. It will be so nice to be away and having fun, especially with my sis and her family! I can't wait.

So, besides the fact that our lil puppy increases size every day, all is well on the puppy front. Roxie is going to be HUGE!! What was I thinking?? Oh well, she is a sweety and really a very good dog. We still need to follow up with some obedience training, but she's so smart, it will be a cinch!

Okay, gotta go take advantage of the kids' nap time. Thank you all for following along on this journey and for your kind words.

God bless,
G