Been A Long Day

Today was a very long day. Nick and I left the house around 10:30AM and we didn't get home until 7:40PM. Kate met us down at the hospital and together we made it through a stressful day. Today was Nick's appointment to meet with the radiation/oncology doctors. It has been a long week of ruminating on and thinking about the idea of choosing radiation as a treatment option for Nick's leukemia. The idea of willingly accepting a treatment like this goes against everything that is natural to our concept of life preservation. But, then again, once you have had an assortment of toxic chemicals pumped into your body, had someone else's bone marrow cells infused into your blood, and you have taken more pharmaceuticals than you ever imagined was possible, well, I guess it is not such a huge leap to accept gamma ray irradiation of your brain and spine as just the next weapon in the arsenal against this conniving and cunning enemy. No wonder we were all on edge with nervous energy and high anxiety about what was to come. Every night I just want to cry (and I often do) when I think about Nick having to go through another set of what I really consider to be barbaric and medieval treatments. I am trying to work my way around to seeing this as a positive in that it may help Nick beat this disease. It will take time, if I can ever turn it around.

The newest set of doctors on this cruise ship from hell seem to feel that it will be "safe" for Nick to get this treatment, safe being a relative term and not at all reassuring. If you read about the side effects of cranial-spinal irradiation, the laundry list of bad things is daunting and produces a gnawing pain in my stomach. And yet today, the doctors seemed to be saying that the "only" side effects he had to worry about were nausea and fatigue. At this point I wanted to stand up on the exam table in the little cramped room where we are all meeting (Nick, me, Kate, and two doctors, and a nurse, except she wasn't there cause she had to go to class) and do my best Norma Rae impersonation and SCREAM at the top of my anguished mother lungs, "YOU ARE BLEEPING (expletive deleted) KIDDING ME, RIGHT?" I cannot begin to explain the fear I have about this....I don't know why, I just do. Since it seems we have already purchased tickets for this ride, I can only pray that the benefits of this treatment will outweigh the risks. How does this sound to you?

Radiation therapy works by damaging the DNA of cells. The damage is caused by a photon, electron, proton, neutron, or ion beam directly or indirectly ionizing the atoms which make up the DNA chain. OH MY GOD!! Sure just go on and ionize brain cells and spine cells.

And the actual process of receiving the radiation does not seem particularly pleasant. I will save the details for another post, because I cannot face relaying all that information right now.

Nick's blood work was stable and his liver enzymes are improving (a small positive in this good news wasteland). Nick's LP and IT chemo treatment went well. Dr. Frosty was back in town, so he spent some time answering questions that Nick had about the radiation.

Nick had several other visitors including Nurse Lovely and the nutritionist. The nutritionist had some good suggestions, but, most of the stuff I already knew. It is just a matter of getting Nick on the same page with the goal of gaining weight. I am very worried now because he lost weight this week (down to 142 lbs.) and the radiation therapy can cause a lot of nausea and fatigue. The nausea ALWAYS impacts on Nick's ability to eat and the weight will fall off even more.

Right now, I don't know when they will be starting the treatments, but, it may be as early as sometime next week. Nick has to go to hospital tomorrow for a whole body CT scan and "molding" of the devices used to hold his body in place for the treatments. Every time Nick gets a treatment, he must be "locked" down into this mold and he will not be able to move. Every time I think of my child getting zapped with this radiation, I just want to crawl into a dark place and never come out. I will accept it because I have to and I will be there for Nick come hell or high water because I love him so much and we both want him to be well so badly. I feel like a do before he had the BMT, so DAMN SCARED! So I when I found these quotes by one of Nick's favorite poets, I felt just a little better.

“Always do what you are afraid to do.” Ralph Waldo Emerson

“He who is not everyday conquering some fear has not learned the secret of life.” Ralph Waldo Emerson

Dropping In

Suspended in time and space,

Elated to be flying so high

Afraid to fall

Into the unknown depths below.

Gathering momentum for another run

Searching for strength to find a way

To the safety on the other side.

Choices to make,

Between evil and despair.

Gravity has proven to be a

Formidable opponent.

The spirit is willing but

The flesh is weak.

A bag of tricks is no match

For this enemy.

Meet Me At My Window

I know everyone has heard the expression, "When the Lord closes a door, somewhere He opens a window." Well, I wish he'd hurry up and open the window already as I am tired of running into the glass. Nick's lumbar puncture did not go so well today. The NP had some trouble and hit a nerve which sent a painful electric buzz down Nick's leg. I know it scared the both of us as it came and went suddenly, but, it was quite a shock for Nick both physically and mentally. It is now official, it really sucks too watch someone you love hurting. Of course, I already know this, but days like today just seem to underscore the reality that Nick is still battling leukemia and we have not yet won the fight.
Nick was quiet and sleepy after the procedure and his back was bothering him a little, so I worked on the computer while he rested. I feel like we are in limbo....waiting for that window to open. I know Nick wants to be well so badly...he tells me so. It makes me sad, because we all want him to be well and we are all helpless to do anything but love him and try to keep his spirits up while we all wait. If a person's goodness, toughness and ability to keep swimming upstream against all odds counted for something, Nick would be cured by now.

After we arrived home, we got a call from Dr. Frosty (not his real name for those of you who wanted to know) Nick's spinal fluid was clear and the plan is to decrease the number of IT treatments to one per week. The good news came with a caveat though. The possibility of radiation treatments has been put on the table again and the doctors want Nick to meet with the radiation/oncology doctors to discuss this treatment option. It is the opinion of Nick's oncology doctors that this is something Nick should have done to insure that any potential "sanctuary" sites in Nick's brain or spine will be free of leukemia cells. I have many questions and many more concerns...but, those will have to wait for another post. In the meanwhile, I am wondering why the window won't open.

“The body is a house of many windows: there we all sit, showing ourselves and crying on the passers-by to come and love us.” Robert Louis Stevenson

“One of the most tragic things I know about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon-instead of enjoying the roses blooming outside our windows today.” Dale Carnegie

Tired Puppy

This how Nick is feeling right now...dog-tired! Or as my Grandpa Barry used to say, "He's too pooped to participate!"

The weekend has passed without incident. A visit from Aunt Elaine provided much needed diversion from our usual routine. Her visit was anticipated by all with equal amounts of joy and excitement.

Nick & I were off to the airport on Friday to pick up my sister and bring her home to our humble abode. Nick has been looking forward to this visit for quite some time and I know it was a real treat for him to have his Aunt Elaine here. After eight months of "living in a bubble" having a new face to stare at and talk to creates quite a stir.

Some consideration had been given to a gathering but Uncle Dan was sick with the FLU!! So he and his family were on the no invite list. Aunt Barbara was also down and out still battling some kind of nasty cold. Uncle Steve and family were well so they came to visit on Saturday. Though we really didn't do a damn thing, the time flew by, with lots of eating, talking, TV watching, some walking and stretching, but, mostly we all sat around like a bunch of couch potatoes.

Nick has not really had the energy to go gallivanting about the countryside yet. We had hoped to venture out, but, alas concerns regarding Nick's low counts and his general lack of endurance has kept up all home in our little cocoon and for the most part, happily so.

By Sunday, Nick was beginning to show some signs of wear and tear from the long weekend. I am not sure if something is brewing or if he just has gotten behind on his sleep. Aunt Elaine flew back to the windy city and Nick went out to dinner with Kate and family. Glenn tried to catch up on his school work. SARA worked all day and I got to vacuum, do laundry, mop floors, and wipe down innumerable surfaces with bleach and disinfecting spray. The highlight of my evening was to watch the Amazing Race!

Nick's last treatment was on Thursday, and we have not heard what the results of the test were as Dr. Frosty is away and he is the only one who actually takes the time to find out results and call us. I assume no news is good news. Today we will be back down to the Hop for another round...I really need to sit in my corner just a little longer, cause I'm pooped too!

Cardinal Karma

We have lots of birds in our backyard. I can't name them all, but, we have cardinals, blue jays, and doves. Nick and Sara's Nana always loved cardinals. She is no longer here with us on our human earth, but, we know she is up in Heaven keeping watch over all of her babies. Now whenever we see one we think of her.

Yesterday, Nick excitedly reported that a cardinal had landed on his window sill outside his bedroom window. I can picture Nick calmly watching this little fellow as it perched so peacefully on the sill, the two of them happy to enjoy each others company. Nick enjoys watching the birds outside in our backyard. I do too. We feed them regularly to keep them fat and happy. Nick says the cardinal coming to his window is a sign that he is going to get better and that his Nana is watching over him. I like to think that too.

Today we got some GOOD NEWS. Isn't it nice to have some good news every now and then?
Dr. Frosty called this morning to let us know that Nick's test from yesterday came back with so few cells that they could not do the flow cytometry test. This is a good thing because it means the Thiotepa is working. So for today, we will quietly smile and enjoy a few moments of peace. I hope the next time Nana pays us a visit there will be more good news!

Nick his hanging tough. He has had a few visits from friends, which have been so wonderful and help to keep him sane. His counts remain low and we must remain steadfast in our fight against germs! However, we are learning how to work around these constraints and keep Nick as safe as possible while still trying to allow him to have a life. His weight has been holding steady at 143 pounds. His appetite seems good and his spirits today are up. Although, right now, he is watching a sad but good movie called "The Fountain." I will have to talk about that movie another day. Today will not be sad or melancholy. Today we will smile and dream of all good things.

The song is a favorite of my blog soldier buddy Suspect. Whenever he puts this song on his playlist I feel like he is having a good day and it makes me smile. Enjoy.

Tilting At Windmills

It has been a quiet couple of days. Nick has been recovering from his latest round of IT chemo with the new drug Thiotepa. This is a very potent chemotherapy agent and I am not sure how it will effect Nick as he continues to get treatments. His appetite is holding and so far there have been no problems with nausea or vomiting...thank goodness. Even though they are putting the medicine into Nick's spinal fluid, some of it will come out into his system and therefore can give him symptoms.

Nick's energy level has been very low and he tires easily. However, this is not unexpected as his counts are most likely low due to the combined hits on his marrow from the IT chemo and the Dasatinib. Nick is due to go back to the clinic on Monday for another treatment and Dr. Frosty will be sending spinal fluid to test at that time. I am praying and hoping that this new drug can kill the blast cells once and for all as there are not many options left with regard to treatment of the spinal fluid. The radiation treatments would be the next step and Dr. Frosty is hesitant to use this "big gun" unless absolutely necessary.

I guess that is all I have for now. While Nick is hanging in there as best he can, this latest news has been really tough on all of us. I pray to God that we are not tilting at windmills. There are days when that is what it feels like as this cancer is a formidable enemy! If we are going to fight this beast, we must be prepared, for the journey is long and not for the faint of heart. Please keep Nick in your thoughts, in your hearts and in your prayers.

“So many of our DREAMS at first seem Impossible, then they seem Improbable, and then when we Summon the Will, they soon become Inevitable.” ~Christopher Reeve

“Either you decide to stay in the shallow end of the pool or you go out in the ocean.”
~ Christopher Reeve

Stormy Weather

“The wise man in the storm prays to God, not for safety from danger, but deliverance from fear” ~Ralph Waldo Emerson

On Wednesday morning, we got a call from Dr. Frosty. The news was not good. Nick's latest spinal fluid test shows the blast cells have come back. I hate the horrible feeling in the pit of my stomach when I know bad news is coming. Nick, Sara, and I listened as Dr. Frosty blew up our worlds with this latest news. I truly don't know how many more kicks to the gut I can take. The Mom in me is screaming and kicking and clawing her way against this tide of bad blood cells. God damn you cancer, you won't take my child from me and I don't care how many times you morph into another deadly version of yourself. Give up now, because you cannot win this fight! I am desperate to find a way to understand why this is happening to such a gentle, kind and wonderful spirit. It breaks my heart over and over again. Nick tells me it will all be alright. I want to believe him so much. I want to cry an ocean of tears. I want to crawl into my bed and have someone wake me up and tell me this is all a horrible, horrible, nightmare.

Nuts and bolts: Nick must go back to twice a week IT chemo. They will be changing the toxic chemical du jour to one called Thiotepa or fludarabine. The doctors are not sure why these cells took hold again, but, to continue with the current therapy would be pointless. Nick & I will meet with the neurosurgeon to discuss the Ommaya reservoir. Dr. Frosty et al are pushing hard for Nick to get this thing stuck in his head. They have increased Nick's dose of oral chemo back to 70 mg twice a day, even though it has wiped out his counts! He is STILL neutropenic even though they recently held the medication for several days and then decreased the dose. I don't see how his counts will ever recover. This new chemo is VERY STRONG and I am worried that his marrow will be so suppressed that he will be a severe risk for infection. Also, how he can he have an Ommaya resevoir in his head when his is so neutropenic! Isn't that just asking for trouble?? The possibility of brain radiation has been put out there for us to ruminate on for a while as well. I am so sad right now, but, I feel like i am some kind of automaton going through the motions. I wonder when I am going to lose it, what silly ass thing will happen that sends me over the edge. I am still regrouping from this one. I feel like a Weeble and everyone knows Weebles Wobble but they don't fall down!

Angels on the Moon

The Angels were all singing out of tune,
And hoarse with having little else to do,
Excepting to wind up the sun and moon
Or curb a runaway young star or two.
~Lord Byron

Music is well said to be the speech of angels. ~Thomas Carlyle

“I'm standing on the moon, with nothing left to do, with a lonely view of heaven, but I'd rather be with you”

“My barn having burned to the ground, I can now see the moon." ~Chinese Proverbs