You Capture: Play

"The nine says nine, the nine says nine, every letter makes a sound, the nine says nine"  can be heard, in very loud and cheery two-year-old voice, weekday mornings in the waiting area of the radiation treatment center. 

On weekday evenings, just outside the main hospital, you will find a small child connected by tubes to a medical backpack, walking up and down a red curb,  jumping over small potholes and cracks (saving my back of course).  His smiling mother follows closely behind, making sure that he stays close enough to his backpack, and far enough from the arriving cars.

Andrew has been watching Leapfrog's "Letter Factory" all Houston long.  And sometimes he is a little confused between his numbers and letters, but he is still singing. 

(Here he is rocking out to "Breaking the Law,"  still one of his favorites) 

 After five days of chemo and radiation he is still jumping, smiling, singing songs, and fighting with his brothers.  Yesterday my mom said, "What'd they put in that chemo?"  because he is just so busy.  I am so thankful. 

He amazes me everyday.  He keeps right on playing.

Weekend of Denial

Two weeks down.  Five to go.

Well, Andrew's body wasn't ready for the chemo last week.  His blood cells are finally taking too much of a beating.  So we had a free weekend, and my friend from Phoenix visited with her son, so we had a great time checking out the Johnson Space Center/Houston Space Museum.

and right next to the rockets are...

strangely enough, Texas Longhorns.  Not sure why, but there they were.

And we went to the circus, which was actually pretty lame...I think it has been toned down due to law suits? or insurance costs?  I wonder if the tigers were even real.  Maybe they were just men dressed up as tigers?  The kids were asking if this "was it?" and regretting their pleadings of the last week.   But we fixed that with some cotton candy and popcorn.  Soon, they were all having fun watching the dogs jump over the fences.

(I know, hard to see, but next to the woman in yellow is a line of dogs.  They jumped over fences for a LONG time.  At least we had cotton candy.)

I also discovered that my apartment complex has a "package room." Apparently, I had packages, and no one told me of their arrival! When I finally found them, it was like Christmas.  Two packages from Arkansas (very, very, very sweet and kind, thank you!)

one package from Mississippi (amazingly sweet and over-the-top, thank you!)

and one package from my cousin.

Today we went to the Schlitterbahn water park in Galveston (my mom stayed home with Andrew).  I don't have any pictures, because it is hard to carry a camera around a water park!  It was a nice weekend. Almost forgot the disgusting, painful elephant in the closet.

But the denial ends tomorrow as he gets a double whammy of radiation followed by chemo.  Ah the carefree life of a two year old.  It is almost harder now, because he has been so happy and has probably felt back to normal for the last few days.  My psyche can hardly handle it.  Please please please someone.  Please come up with better cure for cancer.  The current one sucks.

You Capture:Black and White

You Capture: Black and White:

Feels kinda like the Brady Bunch

Puzzle time with Grandma

Grandpa's Hand

Update

Week two of Houston:

We have been through 2/30 radiation treatments so far.  The nurse at the radiation treatment center is amazing.  She is in the right job.  She lets Andrew push all of the buttons on his anesthesia medication pump (right before he passes out).  She has a needle for his port which is amazingly unobtrusive (Andrew only notices it when he sees it) and she does his bloodwork, neupogen shots, and cleans his sticky-taped-skin with adhesive remover, all while he is under anesthesia.  Sweet and kind. Hooray for sweet and kind!!

On the other hand, MD Anderson hospital seems to have no concept of time.  Everything seems to take a minimum of three hours.  The opthamologist appointment was at 11.  We left her office at 2:30.  She finally walked in at 2:15, and had apparently not even glanced at Andrew's file because she proceeded to ask her three sycophants for "a brief summary of his case."  Meanwhile John and I were rolling our eyes at her arrogance.  Anything she said was met with a rageful feeling that she had absolutely no respect for us, or our time.  My only space of tolerance for her, and the only reason I did not completely ignore her, is that she may be some genius whose knowledge we may need in the future.  Hopefully not.

Otherwise, Andrew is doing okay. Chemo is scheduled to start again tomorrow.  We are adjusting to Houston and enjoying the frequent rain and thunderstorms, and the slightly cooler weather.  Anything is better than 117 degrees!! Arizona is an oven right now, so we are glad to be missing that. 

When we are not at the hospital, we have been checking out the local museums:




Today we went to a butterfly exhibit and saw a 5 foot flower that is supposed to smell like a corpse when it opens. It's name is Lois. My mom is Lois too. Meet Lois and Lois.
 

On Sunday we went to the Kemah boardwalk and rode some carnival rides. We are making a vacation out of this in our spare moments.

We have received two new hats as well!  One from Nottingham, England!

and one from Virginia!

Thanks for the sweetness. :)

I suppose that was rather rambling, but there you go.  Our week at a glance.

How He Loves

So, this week I am daily reliving the horror of those first few weeks of diagnosis. It is not as shocking now, but still as unpleasant to hear. New doctors, new eyes looking at all of his paperwork, new MRIs, new reminders of the side effects of all these treatments, and new reminders that all of our efforts could end in disappointment. Ugh. I am such a risk-averse worry wart. They say 5% chance of something and I hear "inevitable." I wish I could change my thinking! I am trying. I truly am. It is easier to ignore the list of side effects when it includes things like "dry mouth, constipation, and diarrhea..." not so easy when the list includes "chance of a new cancerous tumor due to the radiation, blindness, and destruction of his tear duct." Yeah, not so pleasant to hear.

And I look over at my sweet, affectionate, kind, playful child and I just can't stand it.

Despite all of this, we are trying to enjoy every day. Andrew has been very happy, active, playful, and pain-free this chemo cycle. I am SO happy about that! It is so strange that each cycle seems to affect him so differently. We all went to the IMAX theater yesterday, and have gone for several walks around the huge park near our new "home away from home." Andrew has been included and loved every minute of it. He actually seems to have more energy than normal, and has been having a hard time falling asleep at night. But I will take it!!

When we were in the hospital that first weekend, hearing the bad news about Andrew, David Crowder Band's song "How He Loves Us" was playing over and over and over again in my head.  I haven't really heard it since then, because I haven't made it to church very often due to Andrew's rigorous schedule and his compromised immune system. But when we first got here to Houston, in the Proton Beam Radiation clinic, that song was playing over the loudspeaker. Which I found very strange, but very comforting.   I took it as a reminder. A reminder I need.  How He loves us.  Gotta keep on praying and hoping and trusting.   I've been singing this song to Andrew every night now, and he is singing it too.

Texas Bound

We leave Sunday for Texas. The boys think it will be a fun vacation, and we are going to try to make the best of it.  We will try to see the Alamo, the space station, Six Flags, and whatever else looks fun. 

But the real reason we are going is for Andrew.  We will be spending seven weeks in Houston for consultation and then radiation of Andrew’s eye orbit. They have a specialized radiation beam which is more localized and specific--- important when you are radiating near a two-year-old brain.

Some days I still have to slap my face to wake up. Is this truly my reality? Am I really taking a plane to Texas? To live WHERE? For HOW long? WHY???? And it is all with the desperate hope that this will be the last trip to Texas. There is another family there, right now, with their six-year-old son, with this same cancer, in the same place, planning for the removal of their son’s eye and orbit. His came back. After months and months and months of chemo, and weeks and weeks of radiation, it came back. Their story haunts me every day. Cancer is truly demonic.

While trying to pack and get ready, we have also spent the last three days in the new hospital for chemo. Their network doesn’t allow me to write on my blog page for some reason, so I have been writing the old fashioned way…with paper and pen. I think there may be something more emotional about that mode. I don’t know, but I sure found myself crying more. Maybe I just finally had the personal space to let it out.

I see other mothers and fathers wandering the halls of the hospital. Some have been here for 5 years seeking to make their child well. They introduce themselves and want to tell me their story. I want to cover my eyes and ears. I will too easily slip into despair. It is hard enough for me to stay hopeful and positive. My happiness is too fragile.  One day at a time. One day at a time.  Head down.  Don't look up.

Other than the sad stories which surround me, this new hospital is doing wonders for my sanity. I no longer feel like an oppressed prisoner. There is space for us to be a family. The boys can come and stay as long as we want without feeling like they are annoying other people. There is no loudspeaker at 8 pm telling us that “all visitors (daddies and brothers) must exit the building.” In addition to having my own room, I also feel respected. They seem to recognize that parents are people (imagine that), that this is horrendously difficult, and that parents can be part of the solution and not inconvenient attachments. I do not like to be ordered about (in fact, it makes me rageful); I like to be included in the conversation. This new hospital gets that.

Back home today.  One more day to recover and off we go to Texas with a hope and fervent prayer that five and a half weeks of radiation will get the job done. With the prayer that the radiation will not distort his face forever. With the prayer that we will NEVER EVER NEVER EVER have to come back again. And that we will never again be haunted by this disgusting, demonic, hateful cell mutation. How dare it invade my child.

Bye Bye Ursula, Hello Private Room

(no laughing at my horrific photo shop, but you get the idea...

well you can laugh, at least I can't hear you  :)

Well, thanks to my friend,who has been reading my blog, and who is also a pediatric oncology nurse, I have said goodbye to Ursula!

I have also said goodbye to a shared room, sad vomiting baby roommates :(, and late night visits to the ER (well, hopefully). I have switched hospitals! (and nurses!). They have a different policy for fevers, so I will likely be admitted right to the oncology floor.   It is a little bit farther away, but only about 10 minutes.  I had originally considered it, but they weren't going to allow for the outpatient chemo, so I gave up on the idea.  But they are willing to go for it!  So I decided to make the switch.

 I thought it would be easy, and I am happy, but I was so stressed out about the decision, along with everything else, that I pretty much cried all day yesterday.  I had to wait many hours yesterday for Andrew's blood transfusion, and every time anyone asked me a question, I started tearing up.  I will miss my doctor.  He doesn't work out of this hosptial and that is one of the big down sides.  

But...I feel like I can communicate with my nurse (yay!).  Everyone seems to be nicer.  (Maybe they are not quite as stressed out because of the slower pace).  It is a brand new hospital, and the rooms are awesome. Since I am going to be spending so much of the year there, I decided I needed to do it for my sanity.   Big screen TVs, refrigerators in each room, and get this....I get to use the bathroom...IN MY ROOM!!  Can you believe it? 

And, on another sweet, but unrelated note, I keep finding my boys sleeping in the same bed each night.  One night I actually started freaking out thinking about Elizabeth Smart and home kidnappings when I couldn't find them anywhere.  I checked their beds, under their beds, and every room in the house.  Finally, I checked Andrew's room (they never go in there).  There they were.  All three boys, books, stuffed animals, and 20 blankies stuffed into one firetruck toddler bed:

Last night, Andrew returned the favor and crawled into bed with Aaron:

And we made it through the week without any fevers. 

Hooray for the good stuff.