A room with a view

Most people reading this keep up with Nathan's page and so you probably already know that he is in the hospital and Julia is at home on oxygen for pneumonia. I thought I'd add some visuals.

The picturesque scene to the left was taken with my phone out the window in Nathan's hospital room. The onocology kids get private rooms with the view of the park. On of the perks, I guess.






I stayed with Nathan at the hospital today. Since I am breastfeeding, Lauren stayed too. She did pretty well today but I doubt tomorrow will go as well. She is currently in her crib crying refusing to go to bed.











Julia is all hooked up to the oxygen, dosed up with codeine cough syrup and in bed. I am already sick of hearing the drone of the large oxygen machine sitting in out upstairs hall.

I have no idea how long she will need the oxygen. What a pair her and Nathan will make in their room at night, Julia on oxygen, Nathan hooked up to IV antibiotics.

Changing the subject....

I feel the need to write a new post. Sorry about how depressing the last one was.

How about I talk about Lauren. She is growing so fast. She is army-man crawling quite effeciently now. She is also going from her stomach to a sitting position and se pulled up on the bunkbed ladder yesterday. She is such a joy. She hugs us and smiles while doing it. She plays so well by herself and she just wants to be happy all the time.

Here are some pictures.

All's quiet.......

I have been gathering my thoughts on the "A Lion in the House" documentary and I hope to post about it soon.

Otherwise I feel I have nothing interesting to write. I am definately slumping into a depression. It is hard to face the facts that this time, there is almost no chance of Nathan going into remission again and if he does, staying there is so very unlikely. How do you look at 6 year old boy happy and running around and also wrap your head around the fact that his body is filled with cancer and it is probably going to kill him?

So - that's where I am at. That's all I can say.

A Lion in the House

This documentary is billed to be a very real look at the issues families dealing with childhood cancer deal with. I imagine it will be difficult to watch. I plan on Tivo-ing it to watch when I am ready. Any of you who have wondered what it is life for us...this program might give you an insight.

It airs Wednesday June 21 and Thursday June 22 on PBS
Independent Lens . A LION IN THE HOUSE | PBS

Chemo

An imprompto echo

Nathan started his first chemo today since we found out his cancer is back again. This is his 14th round of "chemo" in addition to 10 rounds of high-dose accutane. I am used to this chemo stuff. I was delighted to discover the chemo he is having all week is only a 1 and a half hour infusion! This is very short in chemo-land.

He finished up and we stopped at a nearby bakery for a goodie. As he was perusing the case he started to stagger and sway. I sat him down and his eyes kept closing and rolling back. He recovered after a minute or two and picked out a cookie. We drove right back over to the clinic where they checked him out and could find no reason for it. His doctor decided he had better have an echocardiogram before chemo tomorrow since this chemo can cause heart problems and he has had plenty of this type in the past as well as other types that can hurt the heart. They sent us right over and he had the echo. The tech told me his heart function is just fine.

Now, I am just not sure about mine.

Happy Father's Day

A shout out to all the wonderful Dads out there. A special greeting for my Dad, Bill, my father-in-law, Mike and most importantly my husband, Luke!

We are not doing anything today because we threw a birthday party for 60-some people yesterday at a park and are worn out and also because Julia is sick with a fever.

Luke is also not feeling very festive today in light of our bad news about Nathan this week. We brought Nathan home from the hospital 6 years ago today, also on Father's Day.

So - I wan't going for the down tone in this - sorry.

Fathers, hug your kids today and kids, hug your dads.

Happy 6th Birthday Nathan!

June 16, 2000


June 16, 2001


June 16, 2002


June 16, 2003

June 16, 2004

June 16, 2005


June 16, 2006

Loooong Day

Tuesday, June 13 - in New York City

5:15 am - wake up and shower
6:00 am - nurse Lauren and pump
6:30 am - get stuff together and go catch a cab
6:50 am - arrive at the hospital and the door is locked. I realize I have forgotten to put EMLA (numbing cream ) on Nathan's port so we stop on the street and he lifts up his shirt for me to do it. We then walk to a different door.
7:00 am check in at the Day Hospital.
7:00 - 7:30 am - fight with Nathan to drink oral contrast for his CT scan. I mixed it with 8 oz of ginger ale. He cannot drink that fast. I go get a syringe from the nurses and squirt it in his mouth. He finishes right at 7:30.
7:30 we are waiting
7:40 - Lauren is hungry again - I nurse her with my coverup on.
7:45 - we are still waiting and Nathan needs her port accessed. I stand up - nursing and all and go to the IV room to ask. They take Nathan and I finish nursing Lauren while they put in his port needle and take several vials of blood. They hook him up to an IV pole as well.
8:10 - We all go down to CT scan.
8:10 - 9:00 - we wait for the 8:20 CT scan.
9:00 - my mom goes with Nathan to CT scan. Since I am a nursing mother and I had an alternative they thought it was better if my mom went in instead of me.
9:15 - done with CT scan - back upstairs to the Day Hospital
9:15 - 9:35 we wait for his exam he needs before his bone marrow aspirations (BMA)
9:35 - They are ready to see him. The nurse is slowly checking him out when I ask about his BMA which is supposed to be at 9:40 - they are running late - no worries.
9:40 - 10:20 - Nathan has his exam and I chat with the doctor and nurses.
10:20 - 10:45 - We wait in the Playroom for them to call him for his BMA. He is getting hungry - but no food allowed. My mom and I feed Lauren some baby food.
10:45 - they are ready for him. I take him to the bathroom to collect his urine. I get pee on my pants but at least it is not yet radioactive (you'll see later)
10:45 - 10:55 We go into the procedure room and he lies down on the table. We wait for the anesthesiologist and chat with the the nurses and doctors.
10:55 - The anesthesiologist kicks me out before she puts Nathan under. She said "mom out now - Dr. X's rule!" Usually I can stay while they put him under but it is no big deal. Doctor says to me quietly - "is that OK Mrs. G?" I relpy that it is just fine and leave.
10:55 - 11:30 - I wait in the small waiting area. I chat with two sisters who remember me from several years ago. I catch up with them about their daugther/niece. I call Luke and chat for a few mintues. I talk with a grandmother waiting for her grandson to be done with an echo. He is recently diagnosed and I can tell she is still reeling but far enough past the shock stage to have the adrenaline and looks very weary. We exchange stories.
11:30 Nathan is awake. I bring him his post BMA present - a mail truck. He is groggy but very happy. He says he wants to go. I carry him out since he is still walking like a drunk person. We go find my mom and Lauren and Lauren needs to nurse again and so it is a good excuse to make Nathan sit for a few minutes. My mom goes and fetches a cookie from the teen room to keep Nathan happy.
11:50 - 1:00 We all go down to the cafeteria for lunch. We get it in shifts while someone sits with Lauren. It is very crowded and we take our time.
1:00 - 1:35 we go back up to the Day Hospital and Nathan plays in the playroom.
1:35 - 3:05 - we wait and wait and wait for Nathan's MIBG injection. The injection takes about 5 minutes and is scheduled for 1:45. They are apparently VERY backed up. Nathan and I are SO tired of waiting. There is a TV on tuned to Days of Our Lives. The story lines are ridiculous. Nathan plays with his cars and trucks. We realize the promised playground romp after the MIBG injection is now not going to happen.
3:05 - 3:15 - get the MIBG injection (now Nathan is radioactive)
3:15 - 3:45 - we go back upstairs and find my mom with a sleeping LAuren who is so hungry she has fallen asleep after crying. I wake her up and nurse her while Nathan paints in the playroom.
3:45 - we all make our way to 11 to the MRI scheduled for 4:00 pm
3:45 - 5:00 - we wait for the MRI. Nathan plays, Lauren acts hungry again so I nurse her a little. We chat with the other occupants of the small waiting room. There is a man who is retireing as a NYC fire fighter. He was at ground zero. He has since developed brain cancer. They and lots of their doctors believe his ground zero exposure is to blame.
5:00 - Nathan and I go into the MRI. We are given earplugs and he is put into the machine. I sit in my chair eyeing everything metal. Nathan has already expressed concern about his port needle and is assure it is stainless steel and it is only iron and nickel we need to worry about.
5:00 - 5:45 - Nathan has his MRI. The machine is not nearly and loud as ones I have sat outside the door of in the past. We get done and go get my mom and Lauren and head out.
5:50 - we catch a cab and go back to my Aunt's apartment.
6:00 - we freshen up and give Lauren her daily bottle.
6:15 - we go up to see friends Jo and Ju who live in the same building. My aunt is good friends with them from childhood and so my mother know her a little too.
6:15 - 6:45 - we drink some wine and chat - ahhhh
6:45 - 8:15 - we dine and talk.
8:15 - Lauren is tire and hungry and so we have to go.
8:15 - 8:45 I nurse Lauren while my mom tries to put Nathan to bed. He doesn't like to sleep in a room by himself so there is much cajoling.
8:45 - I put Lauren down in the crin in the hall and so we stay in the bedroom and watch TV until it is time to sleep.
10:00 - I go to sleep.

Bravery

brav·er·y

noun

Definition:

great courage: courage in the face of danger, difficulty, or pain

I have been thinking about that word since many people told Nathan how brave he was over the last few days. I wondered to myself if bravery was more about taking on difficult things that were NOT required and so I wondered if the word properly applied to him. Now that I see the definition I see that indeed, it does.

Full plate

I just got back from New York City last night from Nathan's scans. I wish I had been able to blog while I was there because there were lots of things I wanted to blog about. I will try to resurrect some of them. Meanwhile I have to plan for Nathan's birthday party Saturday. It will be 50 some people at a pavillion at a park and I have done nothing!

We are also waiting for scan resultrs which I am expecting to be bad news. One of his scans is the type where bad stuff "lights up" and I have seen enough of these to know what is and is not supposed to light up and I think I saw stuff. Hopefully the doctor will get back to us the scans today. We'll go from there....

Trying to crawl

Lauren got a tooth and is now trying to crawl. Had to share...

An easy dinner

We have some leftover salad. I decided I would just make a pasta salad to go with it. I could make it this morning and dinner would be done.

Well - I decided I needed some bread - so I made some bread from scratch.

Then I remember we had a bag of granny smith apples in the pantry and so I decided I should make a pie *(more on that in a minute)

All the while Lauren had resisted all naps I tried to give her. So she *helped* me do all af the above plus the dishes.

So - now that I am done except for the pie in the oven she has finally decided to nap. I need one too!

*Back to the pie. Kathy - I am going to have to deny (for your sake) that we are related if anyone else sees this pie. Kathy, who is my mother-in-law, is a "pie-expert" as my kids say. I am ashamed of this pie. The crust is a wreck. It fell apart and so it has pieces stuck to it like patchwork. It is the ugliest pie! I just hope it tastes OK. I will need a refresher next month.

Our week in pictures

Nothing more pathetic..

..than a sick baby. Lauren has caught a cold and has a cough and stuffy nose. It is just the saddest thing to listen to her cough. I don't think Nathan or Julia were sick at such a young age. Last night the poor thing was trying to sleep through the coughing but finally woke up and cried. I put her to bed with me.

Sorry for the quiet on the blog front. There is a good reason for it which shall be revealed by picture in a few days.