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

See The World

This photo is called "Going Home." I really like it. Nick has been wanting to get a bike. I am not sure when he will actually be strong enough to start riding one, but, I picture him setting out upon a journey with Kate right behind him on her bike and the two of them will ride the country side on a wonderful adventure. I will be happy he is well and on his way again. I heard this song, "See The World," on the radio today on the way to Nick's appointment. The refrain is so uplifting. Today's visit went amazing well, today's road had very few bumps, even the "bad" weather did not give us any trouble.

Nick's lumbar puncture was perfectly executed by Mindy. She is the nurse practitioner who saw Nick in the IPOP for a long two months. She knows Nick well and is very good. It was such a pleasure to see her today and she got Nick's test so quickly he was even surprised that the needle was already in place and the precious spinal fluid was flowing into tubes before he even realized it. The tests are pending and hopefully, we will get a call from Dr. Frosty tomorrow letting us know that the fluid is still clear. Nick's counts were marginally improved in the right direction. His WBC & ANC counts are still low. Hematocrit and platelets were low but, stable and not at levels that would require transfusion. Dr. Frosty was happy on the phone...so I guess I should be too. I am more like "pleased" with the direction he seems to be moving in and I reserve the right to withhold judgement for a few more days to a week. I think it is too early yet to know for sure that his counts will return to their proper levels on the reduced dose of Dasatinib. Nick just restarted the Dasatinib on this past Friday, so I think it may take a little longer for us to know if his marrow is happier on this new dose.

For now I am hoping that Nick is starting to feel a little better from all of the latest escapades that he has been going through. His weight was at least stable today, no further losses. I hope to discuss an appetite stimulant with Dr. Frosty. Nick has an ENT appointment next week to follow-up on his sinus issues. He has been running a low grade fever (99's) every now and then which has me still watching and waiting, hoping his counts come up sooner than later to fight whatever is causing these warning signs. So many little things make up the big picture. For now, I am content to watch Nick ride his bike down that road and see the world.

Singing The Blues

This picture is how I want to see Nick, playing his guitar as the sunrises or sets. Feeling once again, happy, healthy and strong. The scene is so calm and quiet. Peaceful. That is how things have been here at the Pippen household for the weekend. For the most part, we have all been rotating in and out of the house for one reason or another. Nick has been struggling along. He has been very tired and I think his counts are still low. I know he is bored to tears and I wish he had energy and counts so he could do something besides sit around all day. We all have seem to have a case of cabin fever. I don't like to venture to far from home these days. Just mother's intuition or something, I don't know. Until Nick starts feeling and looking better, I like to be close to home. So far there has been no fever! Nick's clinic visit is on Tuesday, so we have another day of reprieve and it is so nice to have a three day break from all things Hopkins. Today Nick went over to the school and did some laps for exercise while Glenn tried to find his missing tests. Nick has not really been doing much in the way of moving around, so I think it was good for him to get up and about for a little bit and it might help him sleep better. Too tired to come up with anything to creative tonight. Now it is really late. Good night all. In the words of Scarlet O'Hara..."Tomorrow is another day."

Stand Firm and Be Still

There's no place like home and that is where Nick is right now. Actually he has been up in his bed sleeping for quite some time now. This morning I got the call from Nick that he might be discharged. Needless to say I was somewhat surprised.

I never got to speak with the doctors today, so I did not get to question them before Nick was released. He is due to go back on Friday to the clinic for blood work and follow up appointment. So I will try to summarize the goings on in a more succinct way than I did yesterday.

1. After being rehydrated yesterday, it turns out Nick's hematocrit was actually down to 23!!
So in the wee hours of the night, Nick was transfused with two units of packed red blood cells.
2. His platlet count was up a little, so no need for transfusion there.
3. His white count and ANC were down even more. ANC = 340! Which means he has not reached his nadir yet and we still don't know how low these counts will continue to go. This is my main area of concern as these low counts mean that Nick is a high risk for infection. I thought this was why they wanted Nick in the hospital in the first place, but, apparently this decision was changed somewhere along the way.
4. Nick had no fever at all during his stay in the hospital...which was good news and Nick did not have to start on antibiotics. :)
5. The Sprycell drug will remain on hold until Friday after the lab results come back.
6. The results of Nick's CT scan, sinus scan, blood and other cultures are not back yet. I plan to get the results from Dr. Frosty on Friday.
7. Nick was started on a different medication to clear the C. diff bug from his gut. He has to be on this new one for 21 days!! I just hope this one is easier on his stomach than the Flagyl.
8. The results from the LP were initially reported as "clear" but, today Dr. Frosty came in and told Nick that there was some "debris" noted in the fluid that they want to evaluate further. It will be decided on Friday if Nick needs to have another LP with chemo this week or if he can go to once/week treatments because he has had two "clear" taps in a row.

While Nick was much perkier this afternoon as we headed for home, tonight he did not feel well again and his stomach was bothering him quite a bit. He headed off to bed early and I am praying a good night's sleep will help him recover a little more. The blood will help him feel less fatigued and tired and for the moment his skin color is a little better. For now I will leave you with some scripture that my niece Rachel left for me on my facebook. I find certain scripture to be very comforting to me, even though I am not a big Bible thumper. (See...I will most likely burn in hell for that remark.) Rachel sent me this and also said it was for Nick when he had to lie flat for two hours after his lumbar punctures.

Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Lord will fight for you; you need only to be still. (Exodus 14:13a,14)

Swim

Treading water again. Today was one hell of a day. When people ask Nick or I this question, "Where were you when Barack Obama became the 44th President of the United States?" we will be able to answer, "we were at the Sidney Kimmel Comprehensive Cancer Center." So let me give everyone the run day of our day...
7:30AM I get up...yes, that is very scary and I felt very tired.
8:00AM Call clinic to find out time for LP. I am told we are supposed to be there at 8AM. I respond, "Uh...well that ain't happening since we have not even left our house yet. "And the LP?" I ask. That is scheduled for 11:30AM and there is no blood work to be drawn.
WHAT??? I incredulously query. That is not possible. He has to have blood work.
Meanwhile, Nick has gotten up and gone into BR.
8:30AM Nick is still in BR. I decide to call back to clinic and find out why there is no blood work scheduled to be drawn. They tell me that was an error and Nick will have labs drawn. "When will you be here?" "Um...as soon as I can get Nick out of the BR...30-45 minutes!" I go back upstairs, Nick has gotten back into bed and does not want to get up.
8:45AM I finally cajole Nick out of bed and tell him we have to go.
9:00AM In the car, driving to the Hop. Nick is quiet and not feeling well. The trusty upchuck bucket in the back seat, just in case.
9:40AM Arrive at the Hop, Nick goes into the Weinberg Center while I park. He checks in and the friendly kiosk spits out his appointment paper....it reads as follows:
8AM Meet with Margaret RN
10AM Lab draw
11:30AM LP with IT Chemo
Why would we want to meet with Margaret (whose is not even there today, she is at the inauguration and we have nurse Kim instead) at 8AM...two hours before labs???? Oh my God.
And now back to the timeline:
9:45AM Sit & wait to be called for labs. 10:00AM Still waiting 10:15AM Still waiting
10:30AM WE ARE ALL STILL SITTING and WAITING...everyone is trained to watch the unoccupied reception area. Every so often the door opens and a tech come out, prints out a list of those who have swiped in and then the tech comes out and starts to call people back. We are all like Pavlov's dogs waiting, listening, anticipating....when the door opens we all start rustling in our seats, ready to take off for the lab draw area. The silent cries of "call me please!" are deafening.
Nick's name is called....thank you Jesus, we have won the lottery. This phase of waiting is finally over. Nick goes back to have his blood work done. I remind him to make sure they are drawing all the right labs, which he does. While I wait I strike up conversation with a nice couple in their sixties, husband and wife team. He has lymphoma and he has been battling this disease for twenty years. It keeps coming back! But, he keeps fighting, he keeps swimming just like the Golden in the picture.
10:40AM Nick resurfaces from the depths of the lab draw pool. The white paper in his hand brings the first bit of data - VS & weight. No fever this morning! Yeah.
Background Info: Nick had a low grade fever of 38C last night which equals 100.6F. He was feeling generally punky last night as well and had a bloody nose, vomited x i and "the look" was in evidence. I called the on-call doctor who urged us to watch & wait and call back later for any new developments or continued fever)
BP slightly low 100's/54. WEIGHT = 140 lbs. down again from last week's 143 lbs.
10:45AM Head upstairs to second floor. Find Nurse Kim, Nick wants to lie down as he does not feel well. Request pre-meds for LP. Nurse Kim tells us we have to wait for platlet results to come back. (I asked Dr. Frosty about this last week.) Nurse Kim drops small bomb that Nick might have to get admitted??? Wait, wait, watch Obama, wait, wait.
11:00AM Wait. Watch the man across the way argue with his nurse about why he needs to go get some food before he passes out. Watch him get up, put on his coat and leave. (Inside I am smiling and saying to myself.."You go rebel man!")
11:30AM Scheduled time for LP. Wait some more. Listen to the patient in the next cubicle moan in pain. He only speaks Russian, his caregiver translates. Watch them send him home and listen as they tell him to get some Tylenol. Platlet results come back, they are way down @ 67K. But, they are high enough for LP procedure to be done. The low platelet count also explains the nose bleed. Hmmm....trouble, trouble. Keep treading.
12:00PM Still waiting. Man next store is back. He has his food and he is now ready. Nurse is upset. (I secretly applaud his ability to swim against the tide!)
12:30PM Finally Kathy NP comes to find us and takes Nick back for LP. She is worth the wait.
She get the LP in one stick and she does a wonderful job! This lady also did Nick's first bone marrow. We jog her memory and she tells us about the 22 year old young lady who had first BMB on December 23rd, also just diagnosed with leukemia. Kathy NP states she has done so many "first timers" and she gets smutney. She is having a rough day. She is so overworked today....day after the closed holiday. Have to make up for lost time. Nick & I really like Kathy NP, we will request her in the future.
12:45PM Nick begins his two hours of lying flat. More waiting. He is still tired and not very hungry. Dr. Frosty appears and give Nick the news. His labs are back and his counts are way down!!!! His WBC = 1,080 ANC - 420!!! Hct. 29. This is very disconcerting to me, but, this is not a surprise as I had suspected something was wrong. I figured his counts were down, but, not that much. Nick has once again dipped into the scary neutropenic zone! Dr. Frosty is concerned that the new Gleevac medicine is doing this to Nick. He wants Nick in hospital so we can watch and adjust dosing. Also he is worried about the fever he had last night and wants to watch Nick and do some tests. Nick takes it all in stride. He is not happy about these latest developments and we are both a little worried, but, hoping it will all work out. So far today, no fever!!
2:00PM Waiting. IV started in Nick's arm. HOLD DASATINIB DOSE!!
4:00PM Waiting. Fluid bolus started. Blood cultures drawn.
6:00PM Waiting. Nurse lets us know she hasn't forgotten us. They are waiting too, for a bed to be ready on the floor. Kate comes to see Nick and hang out. Yeah Kate!
7:20PM FINALLY Nick has a room on 5A and we walk ourselves up there. Glenn has arrived just in time to walk up with us to the room with all Nick's stuff from home in tow.
8:00PM Admitted to floor...paperwork, ID bands, weight & VS (again), EKG, IVF's, fill out the
"crazy" assessment. (Tell you about that one another day) organize Nick's stuff, turn on TV, try to get a menu for tomorrow so he can get trays.
9:00PM Waiting to meet with the resident, she takes a history from Nick and does a physical exam. We eat dinner...Matthew's pizza, delicious. Nick actually seems to feel a little better. Could skipping a dose of the Dasatinib work that quickly?? This is the only thing that is different today. We shall see...it will be held for tonight's dose as well.
9:30PM Nurse Julie comes in with meds. There is some confusion about plan. She will page doctor to come back and talk to us and clarify.
10:00PM Still waiting. Nick is tired and wants to go to bed.
10:30PM Finally resident comes back and we get everything straightened out.
11:15PM Glenn & I say goodnight and head for home, both of us are exhausted! Are you??
11:45PM Arrive home...stay up too late. Go to bed and start all over again. In the words of my
buddy Suspect - swish, rinse & repeat.

So did you all get tired of waiting for the point of this story? I hope this gives everyone just an inkling into what our day was like today. Yes, Nick is back in the hospital. This one is easier only because I was expecting it and I at least think I know what is going on. I don't really think he has any kind of big infection. Or at least I pray to God he does not. They wanted to start him on the standard IV antibiotics tonight, but Nick said he wanted to wait and see if actually has another fever. The doctors were ok with this because they were on the fence about starting the antibiotics also. Hopefully, he will remain fever free throughout the night. Nick will have a chest CT to follow up on his cough and the pneumonia he had diagnosed on his last admission. His labs were repeated tonight and I think I will have a better idea of the plan after tomorrow's rounds. The main concern right now are the low counts which have undoubtedly been caused by the Dasatinib. Now we have to wait until his counts rebound and then make a new plan on the Dasatinib dosing. The biggest worry would be if he cannot tolerate the side effects of this med, which he needs. The initial turn around in his presentation was pretty amazing, so that worries me because it shows how much it was affecting him. This medication does have a lot of side effects.

Now last but not least...what is with all the swimming talk. Well this song "Swim" was written by a guy named Andrew McMahon. He used to sing for a band called Something Corporate and now he has a group called Jack's Mannequin. He was diagnosed with leukemia in May 2005 and had his BMT in August 2005! He wrote an album since he was sick and I know his music has been influenced by his experiences going through this process. This song "Swim" I just love! It is a wonderful song and very inspiring to me! It is hard...but, as Andrew writes, "just keep your head above....SWIM!!!" I hope everyone really listens to the words and stays in the fight. I know Nick will and I know all of us are right there with him.

Trouble

It is late and I am tired and I don't feel to great either. I am worried about Nick. I cannot put my finger on it, but, there is something. Does this sound familiar? Now remember tomorrow is a holiday, so I guess that means just sit on your thumbs and wait. On Tuesday, Nick is not even really scheduled to see a doctor, just get labs and LP with IT chemo, so unless we kick up a fuss and jump up and down like monkeys on a banana cart, no one will pay us any mind. The list of symptoms he is experiencing right now is quite endless and put them all together, they spell TROUBLE, with a capital "T" and that rhymes with "P" and that stands for pool. Name that musical for $100. (Mom you can't play!) And speaking of trouble, did anyone know that Mickey's middle name was Trouble. He was officially registered at the vets as "Mickey T."

Nick continues to cough, and cough, and cough, and cough! And then he blows his nose and nothing much comes out for someone with a "socked in sinusitis" that is still there....and then he coughs, and coughs, and coughs some more. Get the picture. But, that 's all normal right? Well, I shall see what tomorrow brings. If needed, I will be calling the medical oncology doctors on the dreaded holiday, and one way or another Nick will get seen by a doctor. Also, low grade fever was brewing tonight....37.9C = 99.6F Up to now, he really hasn't had a fever at all, so this worries me as well.

On an also sucky note: Why did the Ravens have to lose to the Steelers? Aaaaarrrggghhhh!
On a lighter note: I tink I saw a puddy tat!

Closed For Holiday

Wow...how many trolls do you thing are under that bridge? It is a cool picture though. The architecture is beautiful and the sky is eerie. Is the storm coming or going?

Nick went for his regular appointment on Thursday. It all becomes very routine and then it hits you...oh yeah, Nick has to get a big old needle stuck in his back. And that really sucks every time he has to go through it.

After his blood work, Nick had a CT scan of his sinuses. He still has evidence of sinus infection. What that means is any one's guess. Dr. Frosty wants Nick to see an ENT doctor and so he has an appointment for FEB 3rd!! That is weeks away and in the meantime, who knows what that stuff is doing in there. Nick is using all kinds of sprays that the ENT people gave him while he was in the hospital. The problem is they don't seem to do anything. Any of you out there who have any suggestions on how to get rid of this, please feel free to offer your advice.

The LP and IT chemo was then done by one of the nurse practitioners. She missed a few times and then finally got the needle in the right place. I was asking her about the Ommaya and she actually seemed to have a lot of knowledge about them. However, since Nick is not her patient and I guess she didn't have time, I was not able to get her to talk with us about it. Nick and I are both up in the air about this thing. The good news is that the test on the spinal fluid came back with only ONE BAD CELL, so they canceled the flow cytometry test because there were not enough bad cells to do that study. Hopefully, if the next test has similar results, Nick may be able to cut back to only once per week for the intrathecal chemo treatments. It is all guess work as to how and when the doctors make these decisions as to when to decrease the frequency of the chemo and or stop these treatments. If only we had a crystal ball. Where is my Magic Eight Ball when I need it?

While Nick was lying flat for two hours, I went to see about his next appointment, which would be due on Monday. The nurse informed we that they would be closed for the holiday and Nick would have to get his treatment on Tuesday. I was not happy about this, but, after talking with Dr. Frosty he assured me that it was OK. After reading about the half-life of the chemo being only 48-72 hours, I don't really agree; but, we don't have a choice. You see many times it's not really about the science. Sometimes it is about holidays, closed labs and test machines, weekends schedules, under staffing and a myriad of problems that have a huge impact on the patients. Even the inauguration is having a ripple effect on patients who must reschedule their appointment times in order to avoid the traffic and road closures on Tuesday, especially if they are coming from Virginia or Washington DC. Anytime the clinic is closed for the holiday, the next day is always like bedlam, trying to squeeze everyone in who got pushed off the holiday.

The up side is that Nick will now have a four day hiatus from the Hop and lumbar punctures. His lab work showed some areas of concern that bear watching. A lot of his counts are dropping, most likely due to the new "Gleevac" medicine called Dasatinib. This medicine can drop Nick's counts like his WBC, his ANC, his Hct, and his platlets. While not alarmingly low, the trends must be watched to make sure his counts don't get too low. If this happens, they will have to adjust his dose. Nick continues to take the Flagyl for another week. His stomach seems to be trying to settle down and other systems are trying to return to normal, which I hope means that the Flagyl is working. His energy level is still down and I feel like we are in a holding pattern waiting to see what comes of what and when he will start to feel a little better. Nick's appetite has been OK, but, he has a lot of eating to do to gain back all the weight he has lost recently.

This weekend is Glenn's birthday and the Ravens game and on Monday we are all hoping to go to Miss Shirley's for breakfast, one of my new favorite places to go to eat some kind of crazy delicious breakfast food. Hopefully, Kate will be joining us and we will all have some good family together time along with mass quantities of pancakes.

Please keep the cards, letter, emails, and facebook pokes coming. Calling is good too for any and all of Nick's friends out there who might be wondering if they should call or come visit...the answer is YES! If you shouldn't come, we will let you know. Hope to get a lot done this weekend, but, I know I will be paving that road to hell with all my good intentions.

Gems Rock

Thought I would post about my dancers. It is good medicine for me...takes my mind off all the bad stuff for just a little while. This picture is of three of our "Gems" in costume for their pointe dance called "Music Box." They are supposed to look like ballerina dolls that are trying to escape the music box. They dance to Regina Spektor's song of the same name. All the dancers did a great job this past weekend at the Tremaine Convention/Competition in Washington D.C. This was their first competition and was early for us, so Barbara & I were thrilled when they brought home so many good scores and great placement. I hope to have some more pictures to put up for future posts. So here's the rundown:

Conversation Hearts - 1st place Teen Division (Large group Jazz) This was all twelve Gems and yes, we resurrected the phone dance. Ms. Barbara restaged to make the technique more difficult cause we're good like that. We also won BEST SHOWMANSHIP out of all the teen entries.

Music Box - 1st place Senior Division (Trio - Ballet/Pointe) This was the girls above...Kribsy, Shelbinator and Em & M's . The stage was SO SLIPPERY in pointe shoes, it is a miracle they stayed on their feet. This dance also won BEST SHOWMANSHIP for the Senior Division. Ms. Barbara made the costumes which received high praise and she did hair & make-up too!

Free - 2nd place Senior Division (Small Group Lyrical) The six seniors danced this one and they did a great job. They scored in the low nineties which is great for us. The dance that beat them score like 96.

Le Jazz Hot - 1st place Senior Division (Small Group Jazz) Another number by the six seniors, a real crowd pleaser.

We have a few other dances to add to the mix. But they weren't ready for this competition. Click on this link Tremaine Winners. Then click on "View Winners" from Washington, then scroll down to find our Gems with their Best Showmanship trophies for Hearts and Music Box. Don't they look great! Barbara & I are so proud of them...they have come so far and they are real pros! See I told you it was good medicine! Just looking at that picture makes me smile.

Make A Wish

Milk thistle, milk thistle,
Let me down slow,
Help me down slow,
I've been hurryin' on,
I'm not scared of nothin',
And I'll go pound for pound,
I keep death on my mind,
Like a heavy crown.
If I go to heaven,
I'll be bored as hell,
Like a little baby,
At the bottom of a well.
~Connor Oberst


Another day down at the Hopkins today. All went well and with no unexpected surprises. Nick had his blood work done. He has to go back on Thursday, so this time they only checked his electrolytes, liver enzymes and magnesium. All levels were good and moving upward or downward in the right direction. Then Nick had his fifth lumbar puncture and fourth chemo infusion in eight days. The whole process from start to finish probably takes about thirty minutes. Afterwards, Nick has to lie flat for two hours to allow the chemo meds to disperse up & down the spinal canal and up into his brain. Talk about chemo brain! It is very scary to think of what these toxins are doing to his body. The Ommaya reservoir is still on the table but, we have not yet met with anyone to discuss further. In doing my own research I have discovered that in this area the science has not kept pace. There are still many studies to be done and there is not a lot of data to base treatment decisions on when it comes to CNS disease.

I have decided that "one day at a time" has to be removed from the vocabulary of all people working at the Weinberg. It is uttered so many times a day it has become the universal response to any and all events that happen to you or your loved one while in their care. I haven't quite figured out what cliche expression should replace that one, but, I am working on it.

Dr. Frosty called when we got home to let Nick know that his spinal fluid results were about the same as last time. I guess this was good and bad news as things did not slide backwards, but, the goal of "clear" fluid has not been reached. Therefore, Nick & I will return to the Hop on Thursday for another treatment. While sitting around I sometimes jot down thoughts on what I am thinking or what I have seen over the many hours spent at Weinberg.

"Chemotherapy"

The drugs were the colors of

rainbow sprinkles.

Flowing down a tangled plastic highway

Into his veins.

Cherry red and lemon yellow

A toxic cocktail titrated to

wreak havoc with the bad and

rapidly dividing cells.

Will they heal or will they kill?

Chemical soldiers on a

mission to seek and destroy.

Fighting an unseen enemy.

An unruly gang of thieves,

stealing our dreams of love and life.

Laughing in the face of our

badly thrown punches as we

swing wildly at anything that moves.

~BigD

Good News

Finally some good news for a change. Today we found out that the preliminary results from Nick's bone marrow biopsy are GOOD! Nick's donor marrow is working and on the job fighting Nick's CML! The PCR from his marrow was .3 per 1,000 cells which is very, very good and these kind of numbers can even be found in people who have been in remission for years. Nick's MRI results are also good...no signs of CML cells hanging out on myelin sheaths clogging up the works. Therefore, for at least right now, I think any talk of radiation is on the back burner. And if that was not enough...Nick's doctor called after we got home from his appointment to let us know that the IT chemo Nick has been getting is doing the job! When he was admitted this past time, Nick had over 2,000 lymphoid blast cells in his CSF. This was what was causing all the headaches and pain. After the first dose of chemo, this number dropped to 100 blast cells. The phone call from Dr. F (henceforth renamed as Dr. Frosty) gave us the results from the second dose of chemo...only 4 blast cells!! This is all wonderful news and to say I feel a lot better is an understatement.

Today Nick received his fourth lumbar puncture and his third dose of IT chemo. This time the new attending Dr. Pants has decided that methotrexate should be added back into the mix of drugs as he wants to hit these blast cells and hit them hard. Even when the fluid has been cleared of all the bad cells, Nick will still have to continue to get IT chemo for a period of possibly one to two years! In normal circumstances, after a BMT Nick would never get chemo again. However, because it has come back in the spinal fluid, it now has to be treated long term. Nick's case is so rare and unusual there are just not a lot protocols to follow since there are not enough people with his type of leukemia with its combo of bad stem cells, both myeloid and lymphoid. Also, now with the CNS relapse after BMT, this further puts us into new territory. The doctors have to make the best plan they know and go forward. Dr. Pants was very much for Nick having the Ommaya reservoir placed, so we will want to discuss further with a neurosurgeon and eventually Nick must decide if this is the way he wants to go. More on that later.

Despite all this good news, Nick is not feeling very well. He has been very fatigued and his energy level has been down. He has really lost a lot of weight again with the hospital stay and basically being without eating for quite a period of time. Being off the steroids for the GVHD has caused his appetite to plummet back to his pre-steroid level. He is eating, but, it is going to take a while to put on the pounds. So far no problems with headache, nausea or vomiting. I hope it stays that way. The Decadron they are giving him pre and post LP seems to be working right now. The latest development is a GI disturbance of another nature which can also be bad. So the doctor send a test to make sure that the C. difficile has not returned. It could also be the new oral chemo med that is upsetting his stomach as well. We have yet to figure this one out.

Today at Nick's appointment I got very emotional and really lost it for a little bit. Dr. Frosty was very nice and was so upset he kept asking me what happened? Nothing happened per se, sometimes just being in that place gets to me these days. It was hard going back to the clinic, especially knowing Nick is not feeling up to par. Long story for another day. I got it together and Nick had his LP without any problems. (Still painful, no matter what!) While Nick was laying flat for two hours, we got to talk with Dr. Frosty and Dr. Pants for way longer than they probably wanted to talk and answer a lot of our questions. Dr. Pants told us that Nick is actually discussed quite often amongst all of the attending group because his case is quite rare and I believe they are genuinely concerned about Nick and are trying to give him the best chance to beat this thing. That's why I chose this picture...this is Nick telling the cancer where to stick it!

Cradling the Soul

The title of this photo is "Breaking Apart." Sometimes I feel as if that is what is happening to everything I know about my world. It has been particularly difficult for me lately. I just cannot seem to rebound from this one as quickly as I usually do. I know that I will but, I just feel like there is a heavy weight holding me down and I cannot get up. I have no energy or motivation to do anything, except take care of Nick. In this I am steadfast and I will not give up on this fight.

In the way of updates, I don't have much news today as Nick's appointment was cancelled and rescheduled for tomorrow by the doctor. Dr. F's office just calls up and tells us not to come on Wednesday and plan to come on Thursday. After all, we weren't doing anything right? I am hoping that tomorrow when we do go down to the Hop we will be able to get results of all the tests. Nick has decided he would like to have a meeting with Dr. J and Dr. F and whomever we need to meet with to discuss the latest developments and come up with a definitive plan.

Today was a quiet, gray, dreary, cold and wet day. I am happy to say I did not go out into the cold at all. Nick had a visit from Barry and mostly rested. It has been rough not knowing how all the new medicines are going to effect Nick's body. I am sadly amazed at how much the human body can tolerate in terms of chemical assault weapons. Nick is on so many meds that have side effects too innumerable to mention here. Even the "mild" side effects can make you feel miserable and yet, my boy keeps chuggin' along. He is definitely still recovering from the ten days in hospital and perhaps the chemo is hitting him a little bit in terms of his energy and appetite. His stomach has been bothering him as well, so I hope nothing new is developing. In the meanwhile, Nick went to Kate' s parents for dinner. Of course, I was worried and I did not feel that he was up to it. But, I have to let him live his life. He was very tired when he got home and went up to bed straight away. I hope he feels renewed in the morning.

And on a final note, I want to thank everyone for their continued support of Nick and all of us. Words cannot express how much the love and support of Nick and all of us in this family means to each of us and most importantly to Nick's recovery. Those of us in the trenches get weary and we also need to be lifted physically, emotionally and spiritually so that we may continue to lift Nick. We all need our family and friends more than ever. We are all fighting this horrible disease in one way or another every minute of every day 365/24/7! Can you imagine what that must be like? Please don't be afraid to be in touch with us. Please don't worry about what to say. When we get emails, face book comments, cards, letters, pictures, thoughts, words of wisdom, visits, calls, whatever, it brings us much needed energy, it renews our spirit, it provides moments of laughter, it gives us someone to talk to and someone who will listen. The journey is long and we are still riding the train...I hope that most of you will continue to ride along, because we cannot do it without all of you. I found this poem/writing about friends. The author calls her friends the "She's." All of you are our "She's". Thank you for being there for all of us and especially for Nick. Please keep the prayers and good wishes coming. I know Nick is a little down right now too. We all need a few good laughs right now.

Friends

it was the 'She's' who saved her
pulled her up and pulled her through.
they wove a lifetime blanket of old + wise
green + blessed truths,
that cradled her soul
and saved her from freezing.

Just a quick P.S. - if anyone would like to support one of the soldier's who has a great milblog so that he can win the Weblog Award 2008 for military blogs, please click on this link and vote for the military blog Army Of Dude. http://2008.weblogawards.org
You can only vote once a day for the next couple of days. Thank you for your votes!

Home Again

I am happy to report that Nick is home tonight! After a long day at the hospital, Nick was cleared to go home. Nick was very happy to be coming home once again. Right now, the big picture is still fuzzy and no one is really sure what this new treatment plan will bring, but for now we are all happy to be away from Hopkins and the stress of being in the hospital.

Nick had a bone marrow biopsy today. This morning he got up and walked over to IPOP to find the nurse practitioner who took care of him when we were over there. Nick had hatched a plan the night before to go and ask Mindy if she would do his bone marrow biopsy as she had done it before and she does them all the time and she is very good at what she does. As luck would have it Mindy was there in IPOP and SHE AGREED TO DO THE MARROW BIOPSY! Yeah! When you are having a barbaric test like this done to your body you only want the best. Nick did the best ever with this test. He got the medicine they can give, but, this only really takes the edge off, it does not knock you out or take away the horrible feeling of the "pull." This is when they suck the marrow out of your hip bone and it is reported as an awful, eerie and painful thing, that only those who have been through it understand.

After the bone marrow was over, Dr. Rangy showed up to perform another lumbar puncture and give Nick his dose of IT chemo. Earlier he had been in the room and was talking to us about having something called an Ommaya reservoir placed in Nick's head!!!! This is another barbaric device that is implanted into the ventricles of your head and there is an access port that is completely under the skin of your scalp. This "reservoir" is used to draw out samples of CSF and then give the chemo into the access port. The chemo then runs through the implanted reservoir and into the ventricle in your brain and into your spinal fluid. While this procedure eliminates the need for multiple LP's, it involves a surgery and a neurosurgeon to place it in your head. There are many RISKS to having one of these and the main one is INFECTION. Every time this port is accessed there is a chance of introducing bacteria directly into Nick's head, CSF, ventricles. Dr. SW had mentioned this a few days earlier as a "down the road" possibility, in case Nick was getting tired of the LP's or still needed frequent LP's. I was quite shocked by this coming up today, especially with Nick having all these other tests on his plate. I am not sure if he expected us to say "yes" right then and there or what? Needless to say, Nick has more than a few concerns about this and so this idea was tabled for future consideration.

After Nick's LP was over we started to pack up and got ready to get outta there. Nick & I stopped for some food on the way home and Nick spent a few hours snuggled up on the couch with family before hitting the hay. I think he is still very tired and needs to recover from this long week. Nick was in hospital for ten days! Nick seems to be tolerating the chemo better this time. Perhaps it was the methotrexate that caused the issues last time. The medicine Nick is getting is called Ara-C or Cytarabine. He is also on Decadron, which is a steroid, to try to minimize any irritation to the the brain tissue by the chemo, which can cause the headaches.

We now must wait for the results of the bone marrow and the LP to come back. We are also still waiting to hear the results of the MRI. I ran into Dr. SW by the elevator on my way to the car with a load of stuff. He has been really wonderful (for the most part) and at least a daily presence in the oversight of Nick's care. He complimented me on the job I am doing in trying to keep Nick's care coordinated and all the different arms and heads of the beast working towards the same goal. I think Dr. SW was trying to tell me to keep up what I am doing as it is very necessary. He feels the system at Hopkins is like all things, there is good and bad to their way of doing things. Also, with all these new twists and turns, Nicks is no longer on a specific protocol and there will be many opinions of what we should do and no one know can say for sure what is the exact right formula that will bring Nick's leukemia to it's knees. Dr. SW said, "it is like a ship floating in the ocean." I said, "yes...a ship without an anchor." He said, "no, a ship without a captain." I said to myself...."wow, that's more than a little scary to know!" Guess we will have to captain our own ship to find our way back to safe waters.

"Also, just for the record... Sara Caitlin is my favorite child because she is intelligent, funny, and of course drop dead gorgeous." This is Sara's addition to my post. My sweet girl who has been struggling her way through this just like all of us. Each of us trying to find our way through the emotions that run the gamut from sadness and sorrow to laughter and love. Sara even picked my picture for tonight's post. She doesn't read my blog so if you talk to her, please let her know how proud I am of her and how much I lover her! The journey is far from over and we will all need the strength and support of our friends and family to get through. Please keep Nick in your prayers. While he may be home and feeling better, he is still fighting an opponent who plays dirty and knows no boundaries. As one of the doctors said today, "leukemia does whatever it wants to do and we have no control over it." Truer words were never spoken.

Searching

Tossed on rough waters,
searching. A beacon that will
bring us back to shore.

It is sort of ironic that now that we know what is wrong and what is wrong is not good...now everything is calmer and we have a plan and we are moving forward. Not knowing what was causing Nick's illness was so frustrating and seeing him in pain and just not himself was also quite horrible. The last two days have been calm and quiet, a time for Nick to rest and recover from a long sleepless week. The headaches seem to be gone for the most part and with it the nausea and vomiting. Without the pain, there has been no need for all the narcotic pain meds, therefore, Nick looks more normal each day. His color has improved and his energy level is better.

They are taking Nick off the Gleevac and putting him on the next stronger one up the ladder. This new one is called Sprycel or dasatinib. They want him on this one because it crosses the blood brain barrier and therefore, will better fight any leukemia cells that are lurking there. There was confusion yesterday as to which exact drug because when I arrived the prescription written for Nick's discharge was a different one called Tasigna. Nick and Kate agreed that all three doctors said the Sprycel, so we asked to talk to the doctors. The attending was called and he spoke with me and got somewhat tudinal and told me none of the doctors ever said dasatinib and they wanted him on Tasigna. So Nick got his first dose last night, then this morning they "changed their mind" and said he was supposed to be on the dasatinib!!!! I swear to God it is always something. These are very serious drugs and still somewhat experimental i.e. - there is not a lot of statistical information even out there on these meds. Turns out the blood brain barrier crossing one was the dasatinib, so that's why they changed it back!! Just one more reason why Nick, Kate, & I are ever vigilant as to what is being said and then what is actually being done.

On Monday, January 5th, Nick will have two tests. The first being a lumbar puncture and his second dose of IT (intrathecal) chemotherapy. The second test will be his third bone marrow biopsy. Nick was not supposed to have another one of these until six months after the BMT which would have been at the end of February. However, with the appearance of cells in the spinal fluid, the doctors want to check the bone marrow now to make sure everything is still copacetic in this area. The current attending Dr. SW wants Nick to get IT chemo 3x/week, we are not yet sure whether Nick will be discharged to IPOP or clinic. To us, it really does not make a difference. Both places are equally overcrowded and understaffed (a story for the another post). I prefer that Nick go to IPOP, because I think he will be monitored more closely there. I am concerned about the switch over from Gleevac to Sprycel as this will effect all of his counts in the downward direction and they have to fine tune the dose to get the desired effect without letting his WBC or ANC to get to low. It can also effect platlet count and hematocrit as well. I don't want Nick to get into a situation where he starts needing a lot of transfusions, since he no longer has a line and will have to have an IV started each time.

I am hoping Nick might able to come home tomorrow. His discharge might be held up though due to inability to get his dasatinib prescription filled for his discharge. This drug is expensive and difficult to get and therefore most outpatient pharmacies don't keep this drug "in stock."
I am also worried it will need pre-authorization and his insurance might balk at paying for it. It is critical that Nick not miss any doses, so we must have his rx. in hand before he leaves hospital. When you are inpatient there is no problem getting the drug, once you are discharged you are on your own. So in the meanwhile, Nick is billed to stay in the hospital when he really doesn't need to be there. And people wonder why health care costs are soaring. I am not sure what Nick's medical billing is up to at this juncture, but, I would venture to guess it is easily past 150K.

I am still trying to come to grips with this new turn of events. I would not wish this journey on anyone. Tonight on the way home, Glenn & I stopped at the little desk where you get your parking validated. There was a lady there obviously upset, crying and in pain. Not physical pain...heart pain. She was talking about her loved one and she said "She is so sick and I really hate to leave her." The parking attendant gave her a hug and some gentle words. I watched her walk away to the elevator as tears that are always so close to the surface these days welled in my own eyes. As we waited, the parking lady told us that this lady was the Mom of a young girl who was up on Weinberg because her type of cancer is so rare they don't even know how to treat it. There was a homemade card on the counter with the girls picture. She looked to be about eleven or twelve years old. Recently they told the family that there is no cure for her.

Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength.” ~August Wilson

My Heart Hurts

So many thoughts running through my mind. Not sure what to say or how to say it...still trying to process, numb in heart and spirit. On Friday January 2nd, 2009, the news was not good. Our Nick has had a relapse of his leukemia in his CNS. I am so sad and heartbroken. I prayed it would not be this. The doctors came (many doctors come when this kind of ish hits the fan) to tell us the results of the flow cytometry from Nick's lumbar puncture. They looked at the fluid and the "blast" cells are back. This is why Nick has been having all the symptoms, the ringing in the ears, the bad headaches, the poor color, most likely the weight loss as well. Nick, Kate and I were there when Dr. J, Dr. F, and Dr. SW all came through and gave us the news. I cannot go into all the medical detail right now, it is late 0300 and it has taken me this long just to figure out how to let everyone know this.

I think we are all in a little bit of shock to say the least. It is so soon after Nick's bone marrow, why, why, why, is all we can ask? The bone marrow seems to be working and we are praying that when they do another marrow biopsy that Nick is still in remission there. I will write more tomorrow to explain. The plan now is that Nick will have to get treatment for the leukemia that is back in his spinal fluid. He must go through a long period of the intrathecal chemo like he got before his transplant. Even though they "cleared" his spinal fluid before the BMT, there is always the chance that the chemo did not kill all the cells that cause the leukemia. When that happens, those cells come out of hiding and the leukemia can come back. He must receive stronger and more frequent doses. The hope is that it can be cleared from his CSF (cerebrospinal fluid) which will mean that there is still a good chance that Nick can beat this thing. Nick is taking it all in stride for today. I am not saying he was not hit hard by this. We all were. It is just that we had some warning that this could be a possibility, so I guess it prepared us all a little. That doens't make this news any easier to hear or accept. God how awful that feeling in your heart or stomach. Nick has already had the first LP (lumbar puncture) and chemo at about 2130 on Friday night. How the chemo will effect him, we are not sure. They are giving him some steroids to try to prevent a "chemical meningitis" that can cause the headaches that come with the LP's.

Before this bomb was dropped, Nick was actually having a better day today. The headache had actually gone away. (Don't ask me how or why) He was up a little bit, ate some food and didn't even throw up. He wants to come home so much. Fortunately, he does not have to stay in the hospital for all of the treatments. Right now, I am not sure when he will come home. We hope soon. The MRI was done today, but, results were not back. Now they will be doing an MRI of his spine as well to check for any suspicious areas, which we hope he does not have. They have even mentioned the possiblity of radiation!!!! This scares the crud out of me and I hope Nick does not have to undergo this treatment.

Please give us all some time to adjust to this news....I don't know how it is possible, but, I swear hearing this news today was worse than the first time. I want to scream and cry and I cannot do any of it. The doctors were not specific, but, of course, this is a road we did not want to go down. More trolls. I cannot even think straight right now. The other day Nick wanted to go home so bad he had packed up all his stuff and was ready to roll out. Later that afternoon, when I saw what he had done, it just made me so sad. How many tears can one person cry? I am trying to be strong and hopeful and believe that Nick will beat this thing, but, it is so hard when the blows keep coming right out of nowhere. I don't know how Nick does it. He has been so strong, brave and patient, waiting to see the light at the end of the tunnel. Thank you for all of your thoughts and prayers. I will let everyone know when Nick is out of hospital. He felt well enough today (before his treatment) so I guess we just have to wait and see how things go with the chemo on board again!

There is some good news...Mr. & Mrs. H went home yesterday after spending a month on 5A.
Mr. H is doing better, but, is fighting a similar battle with a relapse as well. Please find some angels to watch over these guys. Peace

Caution: Bumpy Roads

For any of you out there who don't already know this, try not to get sick or be admitted to the hospital over the holiday! All hospital functions go into hibernate and nothing seems to happen unless you are designated an EMERGENCY in big capital letters.

Current Factoids:
1.Nick still does not feel well and looks like doo-doo. He said he felt "better" this morning, which apparently prompted him to decide he was ready to go home. He then proceeded to pack up all his clothing that was in the cabinet in preparation of his departure. When I came in and discovered this I just wanted to cry and I did.

2. MRI still not done...it's a holiday.

3. IV Acyclovir was started because Nick's spinal fluid had 2,000 white blood cells in it.
Normal = 0. This could be due to infection or the very bad troll has come out from the bridge big time. A test called flow cytometry examines the cells and determines what kind they are....not done. It's a holiday.

4. What will be the plan when they find whatever it is they find? Don't know yet.

5. Nick has had an allergic reaction to either the morphine or the Benadryl he was given at the same time. He broke out in bad, itchy, splotchy hives all over his back, neck, and chest and was complaining of swelling of his eyes, cheeks and nose. Luckily his airway was not involved. Then they had to give him hydrocortisone for the allergic reaction, which is a steroid like medication that can cause immunosuppression, which Nick does not need right now.

5. Nick says he is hungry, but, today unable to eat much of anything. He has already placed orders for tomorrow's food, so I hope he will be able to eat something tomorrow.

6. If I have to type the word headache tomorrow, I will not be held responsible for my actions.

New Year's Eve Baby

Just a quick update so everyone can relax a bit and take a breath, including me. Today has been a much better day. It started with a groggy, narcotized call from Nick saying he was going to go for his test at 9:30AM. After trying to get a coherent sentence out of him for a few minutes, I told him I loved him and that Dad & I were on the way.

Upon our arrival, Nick was already gone. Two hours later, Nick was still not back on the floor. Just as the nurse was calling to check on his whereabouts, he appeared on a stretcher with his big Birkenstock-encased feet hanging off the stretcher and his knit hat on his head. (His hair is growing back by the way!) Sleepy, but, none the worse for wear, Nick was back from his test in one piece.

Shortly after Nick was tucked back into his bed, the doctors appeared for rounds. The test results of the lumbar puncture are not back yet, but, so far "everything looks good." (Translation: We don't really know anything yet.) DR. SW was at rounds and did an exam of Nick. He is now recanting his story and his latest theory is the good 'ol sinusitis headache. I would be really not happy about this except for the fact that Nick is somewhat better today.
He has actually had almost an entire day now without the severe headache. Which is extremely ironic considering he also had the lumbar puncture today, which usually puts him flat in bed with a "spinal" headache for a week stretch. I don't know why this time is different but, it is. Nick said having the LP under flouroscopy was "a piece of cake" compared to the "pin the tail on the donkey" like process he had experienced down in the clinic for seven or eight weeks before his transplant. In addition, nothing like an opiate pain reliever to take the edge off. Nick has been getting morphine (by mouth) around the clock every three hours in order to control the headache pain. He still had two episodes of vomiting last night and at Nick's request they had finally given him Phenagran to stop the puking early in the morning. Thank goodness he remembered we had talked about that...I wish I had asked about it last night. But, it also seemed to do the trick (note to self - write this recipe down in the little bag of tricks!) There has been no nausea or vomiting at all today! YYYYYYEEEEEEAAAAAAHHHHHHHH!!!!!!!!!!!!!!!!!

Nick has actually been out of the bed for a brief sojourn to the chair to eat and sit upright for a time before he climbed back into bed to catch up on some much needed sleep! His numbers all remain steady, with the exception of the bilirubin that is elevated again to 3.1 (Normal is .1-1.2) Doctors not concerned right now, stating it has been that high before. I state it has not. And so it goes.

Nick is still not eating or drinking enough to go home. But, I hope that will change over the next 24 hours. There are plans to do an MRI later tonight??? Nick will be having a small New Year's Eve gathering in the scanner. ALL are welcome, please remove all metal objects and turn off all pacemakers before entering the party. This is invite only...lol!

I am still concerned, but, the terror alert level has been lowered to "Guarded." My combined nurse/mom radar has slowed down the # of pings/second. So I am trying to chill. Right now, Nick is sleeping and Kate is trying to sleep on the hard, extremely uncomfortable bedside chair.
(Translation: TDFLO = Torture Device For Loved Ones I swear the marketing must include something like..."Use of this chair will eliminate most if not all unfriendlies from the bedside. Keep those pesky patient advocates at bay with our most obnoxious chair. Only steadfastly loyal family members and friends can withstand the torture that this chair can inflict.")

We are still all in the gown, glove and mask mode...due to the five day rule out on respiratory viruses. Even though Nick is negative, the precautions must remain in effect. Almost everyone on this floor is in one type of isolation or another!

Looks like Glenn, Kate & I will be spending New Year's Eve 2009 at the Hopkins. I hate this disease for adding another bad New Year's celebration to our list. Nick told me earlier that New Year's has never been a good holiday for him...he didn't elaborate. I remember when Nick and Sara were little, we would stay up all night waiting for the "New Year's baby" to come sliding down the rainbow. This was something Glenn's mom always talked to them about...not sure of the history on this one. In my spare time I will ruminate on New Year's and resolutions and all that good stuff to post at a later date. As you celebrate tonight, please keep our Nick in your thoughts and prayers. Wear a funny hat and do a funny dance just for him. Peace

Sad Puppy

Me and this here puppy are just plumb tuckered out. Once again it is late and I must go to bed. Today was a long day at the hospital.

Nick still does not feel well and the doctors still have not figured out what's wrong. The main issue is A THROBBING HEADACHE that comes and goes several times in an hour. When it gets severe, it causes nausea and then vomiting. Today the new attending, Dr. SW decided to stop the Dilaudid (a very powerful opiate narcotic) that was working for Nick and substitute just plain old Morphine by a pill. Well due to long string of errors, delays and complications, Nick went nine hours without any pain medication. While he did ok for a while, he was soon in extreme pain again. We spoke to nurses and doctors most of evening. When I left, he was taking a liquid form of Morphine that seemed to help for about two hours. He can have it every three, so I guess we will just have to see if it works. Meanwhile, we still don't know what is causing all this. Dr. S does not believe it is all related to the sinus infection, so he has ordered more tests for tomorrow. The plan is to do a lumbar puncture as a diagnostic to check the fluid.
He has already had a CT scan which was negative for anything obvious. He may also get an MRI.

Nick was seen by ENT doctor who stuck probes and tubes into his sinuses....he got numbing medicine, but, not pleasant. Then he coughed for like an hour bringing out all kinds of stuff.
He has not been eating or drinking anything!!! His weight is back down to 149 pounds!! This is so sad and depressing for me. He has lost every bit of the weight he gained while on the steroids.
No one seems to notice or care. They have changed his antibiotic. He continues on all his regular meds, plus about four new nose sprays.

They are also testing to see if his steroid taper happened too quickly and therefore, his adrenal glands forgot to start working again. A lot of his symptoms could fit with a diagnosis of adrenal insufficiency, but, these headaches are just so weird. They do seem like migraine, but, Nick has never had migraine headaches before and he has had these headaches for like 5-6 days now and they seem to be getting more intense with each new day. Tonight his neck also started to hurt...the doctors had already been watching this for signs of meningitis, spinal fluid infection, but, he still has no fever and all of his labs are normal. What is going on with him right now, just doesn't seem to be an infectious type process.

The doctor in true wonderful bedside manner just dropped the biggest bomb of all...that this might be a sign that there is leukemia back in Nick's spinal fluid. This made me sick to my stomach and right now I just cannot believe that this could be what is going on so soon after the BMT. I know Nick and Kate and I were all very upset and worried. Right now I am not letting that idea even into my full consciousness as I cannot and will not accept this explanation.

Nick has been a real trooper but he is tired of being sick and hurting so much right now. He is still not really taking phone calls as he cannot move around too much without starting his head to throbbing. If you have his cell number you can call and leave message or go to Nick's face book. Although he has not been on the computer or anything as he has not felt well enough to do anything besides lay in bed and try not to hurt. I pray to God that the doctors figure out what is wrong so Nick can get better and come home!!!

I am sick myself with Part II of some cold, so I am having trouble sleeping and feel exhausted. This whole thing just hit me like a ton of bricks. It just goes to show how quickly things can just completely turn around and upside down. Please keep Nick in your prayers. Peace