Saturday, December 19, 2009

A little Poem by moi for those normally on my card list!

Just because we didn't
send a card to you this year
Doesn't mean we think any less of you,
in fact, we hold you in our hearts or think you dear!

The plain and simple truth of it,
the honesty, we fear;)
Is time just got away from us
This lovely(but busy) time of year.

So with profound love and joy,
And happiness we pray
Have a very blessed Christmas
and truly Happy Holiday!!!

With thoughts and prayers for
Peace, joy, and love!
Merry Christmas, Happy Hanukah,
Happy New Year and all of that stuff.
~Amy

Much love,
The Tate's
Amy, Jim, Michael, Andrew, James, and Gavin

Tuesday, December 15, 2009

Sad news today

The news was not good today at the Dr's visit. The chemo is not working and the Dr. asked if Mom wanted to start Hospice. Mom is wanting to give one more chemo a try but the Dr said that is is unlikely the cancer will be responsive.
Mom is saddened but ready to move on. She has been so sick these last months and I believe feels somewhat at peace. I am very sad and though not surprised, doing my best to move forward as well. Of course we can still all pray for a miracle!
I break into tears thinking of how much I will miss her if she passes. I love talking to my Mom about my kids,new things in my life and any stresses I have. My Mom is who I turn to most for talks...I know she is always there.

Sunday, November 15, 2009

It's the little things..

that seem overwhelming sometimes.
This has been a tough month. Two weeks ago my Mom came up for a hernia repair. Most of you who have read my blog will remember that she has been battling ovarian cancer for 5 years. Last year she seemed at deaths door but through a series of miracles, made a remarkable recovery. On Sept. 22nd she was given great news~no signs of cancer. There was a node that they would monitor closely.
I am off on Thursdays so planned to drop James off at Kinder and head up to the hospital around 7:30. When I got there the Surgeon was out and told us that he had seen "visible disease" aka as cancer, and it would not be wise to continue the surgery. He had called her oncologist. Chemo was started and my Mother is experiencing the debilitaing symptoms of a blockage again. She is overwhelmed and so are we.
This is my Mother, the person who grew me and raised me. Every emotion I have in my whole memory is in some way entangled with her. This is hard is an understament...but the world does not stop so I try to fit everything in and carry on.
I wish there was a handbook for those who know someone going through this with a close family member bc there are many who could benefit from it. My world is no longer my own! I do not want to be emotional, or talk too much about this, or make anyone uncomfortable...things just spill out from time to time. Every day is consumed with fear, emotional turmoil, exhaustion, dread, and embarrasment that I cannot be the person I usually am! I spend hours just trying to be "normal" only to find myself feeling anything but!
I hope that everything turns around, but I really do not know. There is no answer and for a planner that in itself is unbearable.
Be well, Mom. I love you and am praying that you can find some comfort!

Wednesday, October 14, 2009

Umm, Mommy...

...those underwear are really too small.

TMI to follow.

I was half naked in the kitchen(my belief is that it is my house and I can be half naked in my house so this happens often). I am not damaging my children...I am helping them to understand that very few women look like the Victoria Secret models and that is GREAT! (I would not mind being perfectly toned like those models but come on people I've had 4 babies and ...this is it :) )
I wear all sorts of undies. Some happen to be hanky panky thongs, and this is what was on my bum today.

James "Mommy, I found the remote and Um, those underwear really are too small for you"
Mommy "Some underwear are supposed to be this way"
James "Well they are pretty small"
Mommy "OK James, they are small"

We're all about the undie education here.

Monday, October 12, 2009

Petition Ovarian Cancer Stamp

There was a luncheon at Baylor UMC last month about Ovarian Cancer. During the luncheon a painting was dispalyed called "Faces of Ovarian Cancer".It was painted by one of the wives of the Dr.'s who treat Ovarian Cancer. My Mother is featured in the painting of Ovarian Cancer Survivors.
There is a petition to make it a postage stamp. Ovarian Cancer needs more recognition! Ovarian cancer is the deadliest of all gynecologic cancers, killing more women than all other gynecologic cancers combined. Please sign this petition to have the photo turned into a stamp:)

Amy
CLICK HERE TO SIGN THE PETITION


PS:Feel free to forward this.

Sunday, October 04, 2009

Snuggling and Raining

Today I am thinking of snuggling up in bed, watching movies, and doing a bunch of nothing. Notice I said "thinking of":). Each time I thik of this I offer it as an option to my almost 6 year old and 4.5 year old...it never seems top of their list. Gavin is a great snuggler...but only for a few minutes and then he tells me "I'll be back in a Jippy(read backwards for more on Jippy)" and dashes off. He does come back(repeat up to 10 times before I get out of my bed), but it is not really relaxing to snuggle this way and watching anything without pausing is a ridiculous thought. Nonetheless, I do offer this as an option on rainy, yucky days like today.

Update to Swine Flu and James Lymphatic malformation: We are healthy and James neck looks super!(again...read backwards for more)

Sunday, September 20, 2009

Flu or Swine Flu?

Gavin was stuffy lst night and looked a little under the weather. In the middle of the night he started coughing really loudly and crying. He seemed in pain but was not warm to the touch. I got up and started looking up symptoms for this nasty swine flu going around. there has been a confirmed case at James' elementary now and 4 deaths in Dallas County this month, so I've started to worry!
This morning he is running a low grade fever and still coughing. He doesn't seem to be in pain now, but the fever worries me:( Off to get lemons and lemon oil and a call to the Dr this morning!

Thursday, September 17, 2009

Left out the MRI results



There was just too much to write in the last post and life is buss. Sorry this amazing news is late!
James was born with a lymphatic malformation previously called a cystic hygroma. He was part of a study for OK432 over the summer. James had another MRI a couple weeks ago.
We drove to Houston yesterday to see Dr. Edmonds for a follow up. We got the most amazing news...after 6 years(they found the mass during a sonogram while I was 28 weeks pregnant) of learning about Lymphatic malformations and 10 ENT's(with varying treatmant plans) James MRI shows NO sign of the mass!!! He had the OK432 injections twice this summer.
We were gearing up for a very dangerous surgery for the last 5 years...thankfully we found Dr. Bauer in Dallas who referred us to Dr. Edmonds last year. I cannot say enough about Dr. Edmonds. He is so caring and kind! We are thankful that we found him and learned surgery is not the only option and other sclerosing agents can have issues. James would have likely had paralysis and a huge scar...and now he is all better!
Dr. Edmonds says that he has not seen a recurrance in any child who has responed this well to treatment! We will go once a year for many years to come for a follow up MRI and results, but feel so good about the prognosis!
James definately has his smile back!
You can read more in previous posts on my blog.

Tuesday, September 15, 2009

Fish, butterflies, and MRI's

We've had a busy couple of weeks. James is really liking kindergarten and doing well. He comes home happy each day.Gavin has adjusted well to having the days to himself. He keeps busy playing. He is so sweet at this age and some moments are too good not to post:
I was laying in bed a couple nights ago.
Gavin climbed up and said: Is there room for me?
Mommy: There's always rooms for Gavin. Let's have snuggle time.
Gavin: Let's have love time.
Mommy: Love time with Mommy and Gavin.
Gavin: I'll be back in a Jippy!
He dashed off and when he came back I said: That was a Jiffy(thinking he just misspoke:)
Gavin: It's Jippy, Mommy. That means fast.

We Spent labor day in DeLeon. The boys fished with Grandpa and Daddy and did a little diging with Granny. Uncle Simon and Missy were ther with Cade and Ryder so it was a great boy weekend:) James and Daddy caught a 21" fish!


Last week he lost a tooth while eating pizza and then the other after I got home from work. He was very excited but we fear the first tooth ended up in his belly.

We went to a butterfly exhibit with cousin Ellie and Aunt Erika on Sunday. The kids had so much fun chasing butterflies. There were some great photo's.

Wednesday, September 02, 2009

Tuesdays




On Tuesdays Jim works from home and has Daddy day. Stephania(our Nanny and wonderful family helper) comes 3 days a week and I am off on Thursdays. This week was the first week that James went to school full days so Gavin and Daddy delivered cigars together and then went and picked up James at 3.
I got these pictures sent to my phone throughout the day:) Cute!

Monday, August 31, 2009

Kindergarten for James





Last Monday my tiny 5 year old started Kindergarten. He was excited and ready. Much readier than I was!
On Sunday night I told him. "I loved you so much when you were a baby and I will love you just as much when you are big". He said he loved me too and put his pajama's on. I can remember very clearly when Michael and Andrew were tiny boys...they grow up so quickly.
At school the next morning he seemed so happy. We were allowed to walk him to class every day and he didn't look nervous. He was named table captain on day two and was very proud and told us all about it. He bought his lunch on Friday and told Stephania what he ate when she picked him up. They were released at noon last week and he told us he wished he could stay all day.
Today I took him to school. We were rushing because I was running late. I forgot to tell him that from now on parents are not allowed into the cafeteria or to walk them to class.
At the door I said " Mommy has to stop here" He looked nervous. I bent down and kissed him.
He walked to his table and sat down. He looked out into the entry where I was still standing, I waved. When he stood up to walk to his room he looked again and I waved to him and managed a smile, he waved back. I was trying very hard not to burst into tears, though a couple slipped out.I waited until I walked in the door and saw his pj's on the floor to really cry:(

Sunday, August 09, 2009

A boating we will go:)


It is a project boat and it is beautiful. 21' Pleasure craft. My husband has wanted one for years as he grew up deep sea fishing and this just was too good a deal to pass up. We are storing it at my Dad's as he has a huge horse barn and room for the "project".
We are excited about the time we will spend on our remodeling:) The boat is in great condition and just needs a little love and updating.

Thursday, August 06, 2009

Update on James

Have I mentioned how well James is healing! His jawline is so defined now...I am continuelly amazed by this sweet little boy! There is no sign at all of the mass that stormed into my life at 28 weeks gestation.
We were in the car the other day and James was talking about going to Galveston with my soon the be nephew, Cade~:)~
James stopped and said: We had to go there because I had to have surgery.
Cade: You had surgery?
James: Yes
Cade: Why did you have to have surgery?
James: I had a Malformation.

Simple as that. "I had a Malformation."
Sweet boy...if only you knew how long a road this has been! You did so great! We are proud of all you went through and most of it was just second nature to you!

WE are so Thankful to have found Dr. Edmonds!

Addictions

James(and very recently Gavin) love to play computer games. James is really good at them and a single game can last way. too. long! If asked to remove himself from the game, crying and hysterics often insue.
I have discussed addiction with him. I have told him I am concerned that he has developed a computer game addiction and we may need to do an intervention(this is of course not serious~I know it's pretty normal child behavior).
I am very attached to my e-mail and to several boards on the computer. I check them frequently(okay...maybe he gets it from somewhere~hmmm...)
Yesterday I was on my e-mail.
James: How long are you going to be on your e-mail?
Mommy: A little bit longer
James: You know some people do have an addiction to e-mail. I think you might have an addiction.
Mommy: LMAO~James you are so funny!
James: It's true, Mommy. You are addicted to your e-mail.

Hmmm...I might need to try a different tactic:)

Saturday, July 25, 2009

Remember When




This song is making me cry lately. I keep thinking of it and I feel so sad. Michael, my first baby, is so big. He is an adult with a girlfriend. He works,he is a talented lyricist and for the most part is wholely self sufficient.
He will likely never live in my home again(I know I should be proud of this...and believe me I am proud of him for this), but it makes me cry...sometimes more than others.
Andrew is on his own this year. He is in some ways even more "on his own" than Michael. He has a girlfriend and a job as well and is such a stable, healthy young man.
James is starting kindergarten this year. Gavin starts next year. I think that really brought this on. I remember when Michael and Andrew were tiny. They grew up overnight once they started school. I think I will cry the whole year!
Off they go...

Sunday, July 19, 2009

Bandaids

James scratched himself today. It was a small scratch but her really felt he needed a bandaid and since we have them right now(they are hard to come by in my home:(), he was adamant.
Often bandaids are used up within days of the box arriving so I am hesitant to start the bandaid brigade until there is a lot of blood. There wasn't, but I gave in.
James found them and opened one all by himself. He proudly announced "look, Mama. I put it on by myself."
Gavin: "I need a bandaid"
Mommy: "Gavin, we only use bandaids when we have an injury"
Gavin: "I do have an injury on my finger but you can't see it"
James: Gavin, you don't need a bandaid because that is not an injury!"
Gavin:"Yes, I do have an injury"
James : "No, Gavin"
Mommy: "James, just let him have one bandaid"
Gavin happily got the bandaid and had me hlep apply it.
James: "You only get one bandaid"
James is very focussed on rules, especially if they apply to Gavin.
About 2 minutes later, Gavin says: My finger doesn't feel hurted that much"
James: "It doesn't take that quick for the hurting to heal, Gavin!"


James neck looks great, btw! His swelling is completely gone. Just need to schedule the MRI to get the all clear{{fingers and toes are crossed}}

Thursday, June 25, 2009

This Month



Wow. I am either really bad at blogging or really busy...maybe it's a combination.
June is incredibly busy for us. We headed to the beach at the end of May into June for James follow up appt.
Our Galveston mini beach trip was fun! WE started with a horrible case of misleading advertisement and subsequently dangerous and under construction condo followed by a safe but 1970 esque condo. WE sepnt most of the time at the beach and searching for sea creatures with the Broyles coustins(Madison, Austin, James and Gavin were so cute and had so much fun!). The water was amazingly clear and it was hot but very breazy~perfect weather.
We drove back to Houson on Monday for our appt w/ Dr. Edmonds. After the huge reaction James had to the procedure we wanted some good news and we got it. Dr. Edmonds felt that James was doing remarkably. The next procedure was scheduled for 6/23 at 7am. Nothing like Houston in the summer!
Gavin's birthday~my sweet little one~was 6/22. He is 4 now. Sweet Gavin. He was laying in bed with me on his birthday and he said: "I'm big now, I'm not a baby" No you probably aren't officially a baby, but you are my baby! His birthday party is Sunday 6/28. He was so tiny so little time ago!
We drove to Houston(again) at 3am on Tuesday mroning for our 7am visit to Texas Children's in Houston. There was just one tiny pocket left so rather than sedating James he had the option of having his neck numbed while the needle aspirated fluid from the pocket and then inject the OK-432. He was so sad that any needles were involved but chose to not have the IV. We couldn't be in the procedure room, but the nurse and child life specialist were very comforting and about 45 minutes later he was all done. He has had very minor swelling so far so we are hopeful that it was such a small pocket in the mass, that this will be an easier recovery. It was well over 100 on Tues in Hosuton so we decided not to try to do anything outside~James had hoped to go to the zoo.
Michael has a gig on 6/27. Funk Dirty is a band of really talented musicians. They play Jazz/ funk and Michael is the vocalist. Some of my family and my team from the store are coming to see him play. My Mom is coming up and will go with us to watch him as well. His birthday is 6/29...time just flies.
I'm so happy she is doing well enough to come "visit". She has chemo on Wed, but we'll have some time to do some fun things.

Friday, May 29, 2009

Headed to the Coast

James is doing really well. His mass is shrinking down every day. He is still pretty concerned and tells us to "look at how much smaller it is"every day:( But it is no longer causing pain and the fever is long gone.
We decided to make a long weekend of James follow up appt so we're on our way to the Beach...okay it's Galveston but the kids LOVED it when we went for the day before James' surgery.
Staying here:
http://www.galvestonescape.com/2994.html

We plan to have TONS of fun! My SIL and her kiddo's(my brother is deployed in Afghanistan right now) will join us on lovely Galveston Island.

Thursday, May 28, 2009

Songs

James is in the laundry room singing:
"Heidi and Ginger are both my pets and Coco, too."
Repeat
Repeat
Repeat...

Not to be outdone, Gavin is now singing:
Ginger and Heidi I love you, love you, love you oo oo. Even Coco.
Repeat in different variations of above...

So sweet...

Monday, May 18, 2009

Differerences

James is old enough to understand that he looks different right now. Last night he was brushing his teeth and I noticed him looking at himself in the mirror. His right neck is very swollen and he looks very disfigured on that side. His sweet chiselled jaw line is no longer there.
Today we went to the grocery store and I must admit I was concerned that people would notice his differences. I am most concerned that he will notice someone noticing. Nothing like that happened, it was business as usual.
When we got home we were unloading groceries and I was making dinner.
James: "Mom why do I have to have this big place on my neck"
Me: " The medicine they put in to heal the pocket makes it swell. There is an infection so your body will heal it up"
James: "what's an infection"
Me: "it means you have an illness in your neck"
James: " I wish I didn't have to have a place"
Mommy" "It's because you are a very special boy. When you were born your neck was swollen and I knew you were special the minute I saw you. Then it went away and it will go away again"
James(starting to cry): "But my smile is different when I have this"
Me: "your smile is always the same to me, James"

I am crying now, but I did not as I said it. I hope his smile can be the same to him again very soon!

The Dr. said the swelling should start to go down after 10-14 days. The fever, swelling, and pain are WNL but still so unpleasant to see him go through. Jim and I are praying every minute that this was truly the best choice!

Saturday, May 16, 2009

Sad:(

I am beyond exhausted. This week has been very tiring, but last night put me over the edge. I did not sleep for even 5 minutes.
James has been in some pain, but mostly if the spot ws touched. Yesterday his neck got really swollen and it was very painful. He couldn't even give hugs without crying and when Daddy tried to kiss his neck, he cried for 5 minutes. It is heartbreaking!
Last night his neck swelled up more and is about the size of a baseball. He cried all night long even on tylenol and then motrin. They are calling in Tylenol with codeine. He cannot get calm enough to fall asleep so I know it really hurts.
I feel so sad. He was perfectly healthy and his mass was hard to see for most people. I am questioning my decision to do this and also really reliving the emotions I had when he was so difigured as a baby.

Thursday, May 14, 2009

Life as we know it

The surgery went great. Tiny little incisions so just the surgitape.
James did great but had a little scare in recovery while stil under. His airway was compromised and they had to prop rolled blankets under him to get his position right. After that he did really well. Swelling and tenderness as expected, but no fever yet. We were at Children's in Houston and they were fantastic! They kept us overnight for observation to make sure the swelling wasn't going to cause more breathing issues, but were able to get out Wednesday and just got back home Wed night. The Dr. said day 3 is usually the worst.We go back in 2 weeks for folllow up, blood work, and another EKG then 4 weeks later for the next procedure.
Things are pretty much back to normal, today(day 3). James has tenderness but can play and eat and sleep as usual. The hospital was great but still pretty scary for him. He was so sad that he could not go home and a little groggy from anesthesia so extra emotional. He just kept saying "I want to go back to the hotel" and tearing up.

Saturday, May 09, 2009

Recent happenings

My Mom has been doing so much better after her septic infection and recent hospital stay. She had her surgery to reverse the iliostomy and is making a remarkable recovery. She only had to stay in the hospital 2 nights and is feeling great! This is wonderful news and remarkable considering all she has been through since Dec and almost losing her!

James procedure is scheduled for Tues at 7:30 am in Houston. We are going to leave early Monday and drive to Galveston for some fun and then head back to Houston to spend the night and be ready for our early morning arrival at Texas Children's. We will stay at least one night and if all is going as planned will drive back home on Wednesday.

I feel confident about our decision, but bad for James as he is really nervous. (and of course nervous about the what-ifs as every parent must feel before an anesthetized procedure). I am hoping that we are going to be one of the few who only have one procdure and then the mass shrinks away to undetectable size!

He is most worried about blood draws as his experience at the lab was horrible! I hope we can schedule future draws at Children's on our follow up visits as he was very traumatized by watching another child scream and then knowing the tech was coming for him and being forcibly held down while. Children's really does such a better job of diverting and quickly doing what is needed in as stressfree a manner as possible!

Monday, April 20, 2009

Meatballs

The boys(tinies) really like helping me cook. They do a pretty good job and we've been making meatballs lately. They help me mix the ingrediants(I've created a yummy recipe) and they form the balls. I cook them and then we all eat them. (This is a Jim approved meal so it will be on the rotation frequently as it is also easy and faily healthy as I use lean ground beaf.)
Last week we made them and I served them. Gavin gobbled his up and seemed qyuite pleased with them. James didn't take a single bite.

Mommy: "James I would like you to eat your meatballs so you're full."
James: "I really want to eat my meat balls but I can't."
Mommy: "Why not?"(sometimes there are cute answers to these questions, but I was unprepaired for this one:) )
James: "Well, my tummy really wants to, but my mouth doesn't and my mouth wins because it eats the food."

Hard to argue with that one:)

Sunday, April 19, 2009

James' Appointment

The procedure is scheduled. We will drive to Houston on May 11 and spend the day entertaining James. On Tues at 7am we will check in to Children's Hospital for James procedure. Dr. Edmonds will sclerose the lymphatic malformation with OK 432 while James is sedated guided by ultrasound.
We know we will spend Tuesday night in the hospital, but hope all goes well and we are released on Wednesday.I'm hoping James has very minimal pain from the procedure. He has been getting labwork done and is very leery of needles now. :(

Thursday, April 09, 2009

The wish to fly

I can remember when I was about 3 or 4, riding a Spring Bouncing Pony(this probably dates me). At some point I launched myself over the top and felt like I was flying. It was wonderful!

For the past year or so James has been trying to fly. He has tried jumping off of the couch arm and flapping his arms, diving through the air on our bed and various other techniques.
This morning we were in the kitchen. I was asking them what they wanted for breakfast(they chose cereal), and as I poured the cereal James took the Apron off the refrigerator door.(Erika gave the Apron to me at Christmas and I have a thing for it:))
James tied it around his neck like a cape and climbed up onto the chair. He jumped off. After he jumped he looked at me with and accepting but dissappointed look.

James: "Well I guess I'll never fly"

Me: "You've been trying to fly for a while, haven't you?"

James(with the cute smirky~but innocent~, "duh Mom" look): "But I don't have feathers"

Me: "No you don't. But you could fly in an airplane"

James: "Or when I'm bigger I can jump out of a plane with a parachute"

Me: "...or you could use a hangglider and fly"

Oh, James...what a fun idea you've had. I'm kinda sad to see you accept the inability of humans to fly:( Good problem solving, though:)

Monday, March 30, 2009

My tiny movie stars...

Okay....not movie stars, but in the video
James is wearing a green vest and Gavin is in a l/s t-shirt They had fun on this shoot.
Debi Deberry is the voice of Jimmy Nuetron.

Happiest Day video

Friday, March 27, 2009

Choices

When Gavin does things that are not allowed we tell him he's making a bad choice. We also give him choices for behavior to help direct him.
The other day I told him he had two choices, sit at the table and eat or go to his room(he had been asked to eat some dinner many times prior to these choices).
His response:
"Mommy, you have two choices. Be nice to me, don't yell at me, don't tell me to eat my dinner,be nice to me"
Glad it's sinking in.

Tuesday, March 24, 2009

James treatment

At 28 weeks pregnant while getting a routine US, a mass was discovered on our sweet baby James' neck. It measured 4cmx4cm and was thought to be a fluid filled mass. WE were uncertain of what the outcome would be at that point and saw specialists, had an MRI fo James through my belly, and had weekly US until delivery. I cried and prayed every day in hopes that he would be able to eat and breathe at birth, wishing that there was no mass! I really rarely think about how terrified I was today, but this week I've been remembering.
At birth the mass was very evident and disfiguring. James was beautiful. I remember feeling very protective and sad, but he was so perfect. I just wanted everyone else to see the perfect boy I saw. I prayed and touched him. I massaged the spot and rubbed my hands together and layed them on his neck to use "energy". Whatever worked was my motto!! I remember going to the store and a well meaning lady saying "oh, what happened to him", she probably thought something bit him or he was having an allergic reaction:( It was so hard for me to say, he was born with a mass...and watch her face as she realized this was a birth defect, not a horrible reaction. I felt bad for her, but also angry that my sweet baby didn't look perfect to her. Not angry at her, just at the world in general.
Miraculously at around 1 month the mass seemed to be shrinking. It really looked smaller to our family. I know, in retrosepct, James was just growing. As James grew the mass stayed the same size and seemed to move inward. It became less detectable(looking back at picture it is still very much there, but it looked so much smaller than when his whole right side was hugely swollen at birth) and today is hard to see unless you know he has it. I can see it clearly and feel it and continue to wish it would just go away, but I know that is unlikely. I also know through MRI's that it has not shrunk, it is just the same size that my sweet tiny boy was born with and now he is much bigger.
We've spent the last 5 years trying to find the right Dr. A Dr who would be our partner, really explain our options, and treat James kindly. Dr. Bauer was perfect for us. We found him and loved him and this is one of his specialties! We hoped he could be the Dr to help us, but he referred us to Dr. Edmonds in Houston.

We made the trip to Houston today for our 1 hour appt w/ Dr. Edmonds. (He is doing the study on lymphatic malformations and OK432 that we hoped James could qualify for instead of the very scary surgery that would likely impact his trigeminal nerve). Good news~he qualifies because his mass is macrocystic rather than microcystic for the most part and we feel good about the Dr. and his explanation of the treatment. We also feel really good we did not do surgery because it is so risky and according to Dr. Edmonds you almost always end up with some damage to the facial nerve.
Bad news~we'll be spending alot of time in Houston. The treatment will most likely take 2-3 procedures and we'll spend 1-2 nights in the hospital the first trip. If all goes well we may not have to stay overnight the second and any subsequent visits.
The procedures causes swelling and infection so James will have a fever for about a week after each procedure. He will likely have irritation(pain:() in his neck where the mass is during this time because the bacteria will cause an infection to hopefully cause the body to block and shrink the mass. We are hopefull that these will be the only side effects.
We have to treat the mass because chances of severe swelling and or infection that requires emergent care are likely without treatment. We want to take care of him before school starts so now is the best time. Treatments should start next month.

Thursday, March 12, 2009

Monday I went with Mom to her appt to hear the results of the CT scan. She had chemo on Wed.

Mom looks good and is able to do almost everything as long as she takes breaks. She is seeing clients, shopping for herself, and driving back and forth to Dallas for her Dr. appt's, labs and chemo.

She is responding well to chemo. The nodules that fill her abdomen are shrinking and there is hope. I was surprised to hear how much cancer is in her abdomin and surrounding area's though. I was also extremely upset to hear that the cancer is in her lymph nodes, around her liver and her lungs and much more aggressive than I thought in December. There is just nothing good I can say about the cancer!

The Dr's believe it will be good to reverse the ostomy next month. It is hard to absorb nutrients and stay hydrated with an iliostomy. Dr. Mathews believes Mom is doing amazingly with it, but really feels better if it is reversed. Dr Tate will do a test next month to make sure the blockage is gone and then proceed with surgery a week later if all looks good. Mom is a bit nervous about having to recover from surgery again, but up for it.

The plan for now is to continue with chemo for as long as it is working. They will finish the 6 course treatment at 3 week intervals and then spread it out to every 4 weeks.

James and Gavin have really been concerned through this. I think it freaked James out when Mom was in the hospital.He saw how upset I was and could't dcide if it was because of my Mom or for her...poor sweetie. Gavin enjoyed using the leg massager's and climbing on the lounge chair.
She has been bringing treats up. Last time she brough some fruits and nuts in cute carrot containers. They told her that they liked candy better. This trip she brought gingerbread women cookies up. James said " I really wish they had candy on them" so she is going to look for candy eyes next time. Gavin and James spent time coloring and doing activity books with her this time.
They have both noticed her hair loss and each had a small reaction to it. James asked "Is that Noni with no hair?" Gavin just looked for a long time trying to digest if she truly was bald. Now they've moved past and seem to think it's just the way things are!

Amy

Saturday, February 21, 2009

Update on my mom

My mom has made remarkable progress. It has been such a roller coaster of emotions; I have not felt up to posting. I think last month was a month of recovery and regrouping as my focus had been on helping my mother through a long term and likely fatal illness and moving towards letting go. Death is not something I can feel good about and it seemed likely that death was my Mothers path.
I get very emotional just thinking about it. I don’t think I was able to really embrace it and feel very overwhelmed with how hard I was working to muddle through each day without losing it. I expected, but could not stand, that my Mother would likely die around the holidays. Add this on to the care of two small boys who don't really understand why their grandmother is living in their room and certainly don't enjoy the hospital. It made for a very challenging couple months.
She did not die and she is doing really well with recovering from surgery for the obstruction and chemo! She is getting great care and they are even talking about doing surgery to reverse the ostomy next month! Miraculous(or appropriate care?!)
She is back in Austin and seeing clients again. She drove herself up to Dallas for her chemo treatment this month and then drove back home. She will continue with chemo every 3 weeks and will likely have surgery next month or April to reverse the ostomy. Your thoughts and prayers have been much appreciated.

Friday, January 23, 2009

Selfishness and uncertainty

I am tired. I am worn out physically and mentally from caring for my Mom. She is at a stable point, but nowhere near well. I am most tired of the uncertainty cancer brings. It is uncertain on a daily basis whether she is getting better or getting worse. She is nearing day 17 and is waiting to lose her hair again(she lost it the first round of chemo, but not the second). They are using the same chemo's that were used the first round.
This will seem somewhat selfish, but I am tired of being asked "How's your Mom?". It is a daily and well meaning question. I know it is asked out of love, but every time I hear it I want to scream! I want to say "She is either living or dying. I have no idea!", but instead I do my best to answer. The truth is, I have no idea!! She is not the person she was 2 months ago, but maybe she can be this way a long time??? Again, I have no idea?!?!
It is hard being a patient mom and caretaker!

Selfishness and uncertainty

I am tired. I am worn out physically and mentally from caring for my Mom. She is at a stable point, but nowhere near well. I am most tired of the uncertainty cancer brings. It is uncertain on a daily basis whether she is getting better or getting worse. She is nearing day 17 and is waiting to lose her hair again(she lost it the first round of chemo, but not the second). They are using the same chemo's that were used the first round.
This will seem somewhat selfish, but I am tired of being asked "How's your Mom?". It is a daily and well meaning question. I know it is asked out of love, but every time I hear it I want to scream! I want to say "She is either living or dying. I have no idea!", but instead I do my best to answer. The truth is, I have no idea!! She is not the person she was 2 months ago, but maybe she can be this way a long time??? Again, I have no idea?!?!
It is hard being a patient mom and caretaker!

Thursday, January 15, 2009

Smoothie

Gavin wanted a smoothie. I told him we didn't have the ingredients to make a smoothie. He quickly informed me that we do and gave me a reciper:
2 banana's
2 mashed pototoes
2 water cups
2 berries
some juice
mud
Gavin wanted a smottie today. I told him we don't have ingrediants for a smoothie(a mommy fib because I had no desire to make a smoothie).
He quickly informed me that we do. He even gave me the recipe:
2 banana's
2 mashed potato's
2 berries
2 water cups
some juice

Thursday, January 01, 2009

Update on my Mom

First of all let me say...Happy New Year. I cannot believe it is 2009! I resolve to be healthier, love more, and live more fully, etc...on to the update.

My Mom is out of the hospital. She is at my house right now but will spend time at my brothers in Frisco as well. We go to her oncologist on Wednesday and hopefully she will be starting chemo next week as well(she has an opening in her incision due to infection and we're trying to get it to heal properly before they start chemo). She is very weak but seems to get better each day. Today she ate more food than she has in months and is excited about it.She does have pain in her abdomin that we will ask her oncologist about. She is taking morphine.
We are learning how all this works. Today I have flushed her pic line w/ saline, injected heperin into her pic line, dressed incision and helped her change her iliostomy bag. All of this just to get her healthy enough to start the real fight against cancer.

Here is her Caringbridge site: http://caringbridge.org/visit/lynnlichtenfels

In the world of all boys...

James, Gavin and I were reading Polar Express. There is a picture of the little boy and his sister. Since my kids have no sisters apparently this is what they think:

Gavin: "There's the boy and his brother named Girl"(pointing the picture of the boy and his sister).

Awe...boys:)