Home Safe

Nick came home today! We will still be going back & forth to IPOP every day starting tomorrow. Nick must remain on the antibiotics Vancomycin and Zosyn, as well as, the anti-fungal medication called AmBisome. He will receive the Ambizome in the IPOP area each day as it is only scheduled to be given one time per day and is a more complicated process. The other antibiotics are given around the clock, so I am working double duty as Mom and night nurse. It seems there is no good every six hour schedule that does not require me to wake up at some ungodly early wee hour of the morning when I would usually be sound asleep.
I am not sure how long Nick will be on these meds, but, I know the crucial number is the ANC and it needs to go up! The sooner it gets to be greater than 1,000, the sooner he can come off all of these medications. I hope his fever remains at bay and there are no new hospital admissions in our future. One of the nurses gave us both a lot of encouragement to NEVER HESITATE to call for fever or symptoms of any kind and if we don't like the response that we get, take it to the next person or the next level up the chain! I was very glad to hear her say that...and I am glad that Nick heard it too. Hopefully, I won't have an opportunity to use this advice any time soon.
This time we will try to stay home for good! Please continue to keep Nick in your thoughts and prayers.

Starpower

Nick is a television star now. He will be signing autographs here at the house real soon. We hope that Nick will be coming home on Saturday or Sunday. In the meanwhile, check out Nick's video from WBAL TV news. Don't forget Nick's "Cancer Sucks" benefit concert tomorrow at Frazer's in Hampden. Here is the link to the video and the story that WBAL did on Nick and his benefit. http://www.wbaltv.com/video/17568143/?taf=bal I think Nick did a great job.

A Fungus Among Us

Today the doctors decided that Nick had to be started on an anti-fungal drug. The name of the drug is liposomal Amphotericin B or AmBisome. I was very upset about this turn of events, but, after speaking with the doctors, they felt strongly that they needed to add this medicine to Nick's treatment in the face of continued fever and neutropenia (low ANC count) despite two days of IV antibiotics. All of Nick's cultures remain negative to date.

This medicine is very strong and has plenty of its own side effects, so much so that they have to "pre-treat" with Tylenol, Benadryl and extra fluids to ward of evil spirits!! Nick was still having some fever today, although lower than yesterday. He did OK with his first dose of what we used to call "Ampho-terrible" at my hospital. The stuff is a bright neon yellow-lime color. Nick's tech called it "beetle juice." I call it very troubling, although, the nurses and doctors once again insist that this is a very common thing that happens to people, especially after a MUD transplant, and not to worry. HA!!! If only I could figure out how to do that! Nick received another unit of blood last night and felt a lot better early today. He was out of bed and sitting up in a chair and even took five laps around the unit. He showered later in the evening and said he felt stronger with all of his new blood cells on board. His stomach is still bothering him and he really is not back to drinking or eating in any kind of normal amounts. Please keep Nick in your thoughts and prayers. Don't forget about the benefit concert this Saturday. Hope everyone can go and enjoy the good music, have some fun, and help raise some money to help Nick get through this rough time in his life. I am so tired...I must go to sleep.

Watch & Wait

When I left the hospital late Tuesday night, Nick was doing a little better. I will try to summarize below:
1) Nick was having some low blood pressure problems, most likely due to dehydration. He received quite a few fluid boluses via the IV to add fuel to the tank
2) Nick received two units of blood due to a low blood count. The fluid from the blood also helped his hydration and improved his blood pressure.
3) Nick's counts were good today (with exception of hematocrit - see #2) His ANC was actually 1190! So hopefully his body will start fighting any germs that try to come his way.
4) Nick continued to run a fever all day. When I left at 2200, he had his first normal temp. So I hope he stays that way throughout the night
5) Nick has to be without fever for twenty-four hours in order to come home.
6) All the cultures they have sent to look for infection have been negative to date. This is good because he doesn't have an infection they can find. This can also be bad because they can't figure out what is causing the fever.
7) The doctors are not sure what is the cause of Nick's fever. The theories are still the same as I mentioned in my previous post. They are watching and treating his symptoms.
8) Nick was feeling a little better later in the night. The vomiting has stopped today. He wasn't able to eat anything today, but, was taking sips of Gatorade. Doctors have no explanation for the vomiting yesterday, other than Nick's fever.

In closing, if everyone could remember that this blog is for my own personal use. I use it to express whatever I need to express and I find it to be a good outlet for that sort of thing. I will always do my best to accurately present the nuts and bolts of what is going on for those who are interested in knowing such. However, the way I write the post and the tenor of that post will always be colored by the way I am feeling at the time I write it. If I am mad, angry, sad, happy etc. this will certainly color the type of post I write. I am not trying to create strife, angst, drama, or stress for anyone who may be reading the blog.

When I first started this blog, Nick was not even diagnosed and no one was even reading my blog. I sometimes forget that others read this, but, I cannot let that influence what and how I write. If what I am writing is upsetting, I suggest that the best course of action would be to stop reading this blog and find yourself a good library book.

I am tired and I need to go to bed.

Grimm Fairy Tales

Does anyone remember the Grimm's fairy tale, "Three Billy Goats Gruff?" As Nick makes this journey, I think of him as crossing this long bridge. In order to be safe and well, he must get to the other side. Underneath the bridge, lives the ugly troll. The troll is the one who keeps popping up and trying to eat Nick. He likes to throw obstacles in his way and try and thwart Nick's efforts to make it to the other side of the bridge. I already hate that troll and I must continue to help Nick keep that troll under the bridge where he belongs. It is almost 9PM and Nick & I have been here at the hospital since 10AM this morning. It has been a long day and Nick still does not feel well. The troll has rolled out some more of the items in his bag o' tricks. The troll is not amusing me!

The phone rang this morning at 0830 waking me from a much needed deep sleep. "Hello, Mrs. Pippen?' This is Ms. Prescott from the IPOP clinic and we see that Nickolas has been running a fever. Would you be able to bring him in an hour earlier, we are very concerned about this fever." I wanted to scream very loudly and then cling to my ceiling like a bat. Please see previous post for rant on fever!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Nick & I spent the day in the IPOP clinic! Kate joined us half way through the afternoon, this brought a smile to Nick's flushed and tired face. Nick started the morning with a fever of 38.9C (102F). He didn't eat anything and threw up before we even left the house.

In the IPOP clinic, Nick had the following things done: weight (158), VS (still febrile and BP low), CT scan of sinuses and chest (negative to date), CBC (all counts good, platelets, packed cell volume, white count and ANC were all up (ANC = 1,000!), chem panel (all electrolytes, kidney and liver function tests look good), stool, urine and blood cultures (all negative so far). They gave him some fluids to hydrate as his BP was low (95/50's). Nick had his antibiotics restarted (Vancomycin & Zosyn) via the IV. He also spent much of the day vomiting (all bile...he hasn't really eaten at all). Why he is vomiting is any one's guess. The doctor's don't seem to know for sure. Nick took three different anti-nausea, anti-emetic meds while over in IPOP and none seemed to really work. Nick was not a happy camper throughout this process. He has been very tired and the fever and vomiting are taking the last little bit of energy he has left. He spent most of the time in IPOP looking glassy-eyed and wiped out.

I spoke with anyone who would listen about my concerns regarding Dr. Livin' Large. The nurse practitioner said she would never have given him off from the clinic on Sunday. It seems that I was not the crazy one and I was told numerous times I had done the right thing by calling. I am not sure what will happen, but, I expect if this was the Army, Dr. Livin' Large would be doin' some serious pushin' right now. If only I could be a part of that...anyway, I was assured that my instincts were correct and the "issue" would be addressed.

The next decision involved whether to send Nick home or admit him. Long story short, Nick was seen by a different attending, Dr. Antfinder, who determined that he should be admitted to 5B for observation, hydration and continued IV antibiotics. I am still very worried as Nick continues to run a fever and his BP is still low. He is getting more fluids as I write so hopefully, this will perk him up. Nick has sworn off food for the night, so IVF's and sips of Gatorade will be the extent of his intake for a while. The doctor seems to think this whole process is one of two things, 1) something infectious that is yet to be defined or 2) "engraftment syndrome" - which sometimes happens when the neutrophil count rises quickly. I don't know much about engraftment syndrome so I am not sure what to make of all of this right now. The doctors are also looking for any signs and symptoms of GVH (graft vs. host), which can start to show up as the counts start to rise.

My gut feeling is that Nick will be in hospital for a minimum of two to three days until they can get a handle on his fever and figure out how to get the troll back under the bridge. I was hoping he would not have to come back into the hospital, but, I feel better knowing he is here and getting the medical care that he needs. I have been told by many of the nurses that it is not unusual for a BMT patient to have to come back into the hospital for a time. That doesn't keep me from worrying about the evil troll and what he has up his sleeve for the next part of the bridge.

Please keep my Billy Goat Gruff in your thoughts and prayers. The bridge is long and the journey is longer, especially when there is an evil troll waiting to pop up every step of the way. I will update tomorrow on how Nick is doing. I do not have his room phone turned on yet. Nick can be reached on his cell phone, but, please remember he needs plenty of rest with his fluids. I plan to call his nurse tonight and check up on how Nick is doing so I can try to have some peace of mind before I go to bed.

Is This An Emergency?

Today there is fever....38 to 38.8 and I am worried and not happy. I don't like fever, especially when the fever is way too high and Nick's ANC count is way too low. Nick's ANC (absolute neutrophil count) has been going in the wrong direction for several days. After a high of 794 a few days ago, it was down to 370 on Sat. Despite this drop in counts, Nick was told he didn't have to come into the IPOP on Sunday. This I also don't get. We have called and bothered the doctor all day about Nick's fever. The doctor seems willing to let Nick stay home "as long as nothing else is wrong." Huh??? This stuff is more than a little bit scary.

I am not sure I understand why the instructions we have received from EVERYONE up to this point have been very specific about how we MUST call for any fever greater than or equal to 38C and then when we do call we get hassled by the answering service.

Phone Lady: Doctors on call service, may I help you?
Me: (Following instructions for BMT patients with fever) I need to speak with the BMT attending on-call please.

Phone Lady: "Is this an emergency?"
Me: Ah...well, not exactly. (Define emergency...like my son has just had a BMT and his ANC is extremely low and he basically has no immune system and therefore cannot fight off any kind of germ of bug that gets into his body and if one does and it does not get treated immediately, then really bad things can and will happen...like that kind of an emergency???????)

Phone Lady: "Well this line is for emergencies only mam."
Me: Well, I have very specific instructions to call for any fever and I need to speak to the "Bone Marrow Attending" on call.

Phone Lady: "What is the name of his doctor?"
Me: What do you mean? (Does this lady understand how many doctors Nick has seen? Not to mention the fact, that Nick's current doctor has nothing to do with who is actually on call!) I really wanted to climb through the phone and strangle this person.

Me: (cont.) I then proceeded to outline all the doctors and let her pick one. Hmmm....let's see now, there was the doctor who admitted Nick (Dr. Krusty) or the one who is his medical oncologist (Dr. Crinoline) or the fellow who actually saw him in outpatient clinic (Dr. Filament) or the attending who saw him when he signed all his consents (Dr. Braid) or the one who came when Dr. Braid went off service (Dr. Jenga) or the one who came on when he went off service (Dr. Ping ) or the one who is apparently on now (Dr. Livin' Large). Now we have never met Dr. Livin' Large and Dr. Livin' Large wouldn't know my son if he fell over him. I WANT TO SPEAK WITH THE BMT ATTENDING ON CALL!

Phone Lady: "Ok I will page Dr. Livn' Large."
Me: Grrrrrrrrr!

Meanwhile back at the ranch, Dr. Livin' Large seems to think it is OK for Nick to hang out here at home with his fever of 38.8 so I pray that the Lord watches over him tonight. Nick was very tired tonight before he went up to bed. He was not with his Mama all weekend so it is hard for me to say why. It could be just the general malaise and fatigue that is normal after all the chemo that Nick got and also the fact that his white count and hematocrit are still low. I will be going up soon to take his temperature and I hope it has gone back down and stays down for the night. This is the first time Nick has had a fever throughout the entire day. Can a fever of engraftment be that high or is he brewing some kind of infection? I don't know about everyone else but I am finding this whole "being at home" thing to be very stressful. I am looking forward to going to IPOP tomorrow and getting all this crap straightened out. Oh yeah, and I am planning to turn in all the thermometers...why do we need them anyway?

Sleep Deprived

The days and nights have blurred into an endless string of hours. I am a night owl and prefer to be up most nights way past any normal sleeping hour. I have had to curtail my forays into the wee hours of the morning due to exhaustion. It is amazing how quickly one's ability to function deteriorates as one's sleep deficit climbs.

Our daily ritual consists of much ado about nothing and yet at the end of each night I wonder where did the day go?

0900 - Rise and shine! (Late for most...too early for me!) Try to find something Nick will eat. His stomach is still not right and in the process of healing. Nick's appetite has improved somewhat since he has been home, but, there is no way he is eating enough food to maintain weight, let alone gain! He is currently down to 157 pounds. His eyes are always bigger than his stomach. Everyone tells me this is normal and it takes time for his GI system to return to normal.

0930 - Morning meds. Sort through the expensive assortment of orange bottles and pull out the meds to start the day. Nick knows all his meds well, so he does this part for himself. Pack snacks, drinks, and food in cooler. Load car and get on the road.

1015 - We head down to the "Hop." Generally at this hour, traffic is not an issue. The construction hell that is currently 95 however, is quite a nightmare. I feel like a Formula One driver as I try to avoid being crushed by semi's that barely fit in the narrow lanes, weave my way around the assortment of orange cones, lane closures, and concrete barrier walls; all the while reminding myself that I am carrying fragile cargo that would not fare well in any kind of accident.

1045 - Off 95 onto Orleans Street. A road with so many potholes, I am sure I have ruined the wheel alignment of every tire on the car. The only way around the holes is to drive down the center of the two lanes. Something I do wherever possible and hope I don't get pulled over by a policemen who is wondering how much I have had to drink.

1100 - Arrive at the Weinberg Center. Drop Nick off at the door. Proceed into the bowels of the building in search of that precious commodity..."a parking place." I squeeze my compact car into the narrow spot, drag out my many bags and head for the elevator.

1105 - When I walk through the Weinberg center, I am always struck by the number of people who inhabit this building during the daytime hours. So many people wearing masks today. So many people with cancer. When Nick arrives at IPOP, he is weighed, VS are done and he has his blood drawn. He is assigned his little cubicle with a bed and curtain to pull for privacy. Now we wait for the infamous counts. Are they up? Are they down? What will this new day bring?

1130 - The nurse shows up with Nick's dose of Zosyn (antibiotic). The nurse's are very nice and generally good. They are always busy...too many patients behind curtains. I hear names of patients who were on the floor with Nick. I am happy to hear they have "made it out" of the BMT unit. They are onto the next phase. I wonder about Mr. & Mrs. H. Mr. H was two weeks ahead of Nick, but, his case is more complicated. Nick got to go home first. Mr. H has been battling his CML (same kind as Nick's) for the last two and a half years! This is his second BMT!
I pray he is improving and will soon follow us to the IPOP land.

12N - The Zosyn is finished. The nurse practitioner comes in to exam Nick and ask him questions. I stay for most of the exam. I always ask Nick if he wants me to leave. He always says no. I step out when he has to have cultures drawn. I sit in the waiting area, two cubicles away. I randomly pick a magazine and find a disconcerting article about transplanted stem cells. I won't discuss hear, but, people wonder why I am nutzoid. I am called back to Nick's cubicle. We continue to wait for the blood work results to come back.

1300 The counts come back. So far all of Nick's "numbers" have been very good! In this regard, I cannot ask for more. We must continue to come to IPOP every day until at least day #30 post transplant. After that point, they will determine if we can cut back to every other day.

1320 - The nurse returns with our doses of Zosyn to take home. They are called "eclipse balls" and they are little marvels of engineering genius. It looks like a tennis ball filled with fluid with a small IV tubing attached to it. When I hook Nick up to the eclipse ball it will pump his Zosyn into his line. It's magic! The nurse then changes Nick's line dressing and unhooks him from his IV. The parole board approved us for early release, we are free to go.

1340 - Back to the car and head for home. The return trip is never as much fun. Nick is usually tired and grouchy and has a lot to say about my driving. This makes every pothole even more annoying to both of us and the tension in the car is palpable.

1430 - Home at last...we straggle into the house. (Sometimes we get home much later, if we stop to see Kate & Petey (Kate's cat) on the way home...then we get home later, we are usually caught in rush hour traffic, Nick is grouchier and my driving is even worse (if that is possible!)

1500 - I usually fix Nick something to eat. I then proceed to do all those household chores that we all must do - bills, mail, grocery list and shopping, laundry (dryer & washer are on the back patio waiting to be fixed), feed the cat, clean the litter box, check emails & blogs, try to make a dent in the piles of boxes all over the house, figure out who might be home when so I can run to bank or post office. And of course, the cleaning and disinfecting is ENDLESS! Did I mention how much I hate cleaning. Swiffering the steps, the floors, bleach wiping door handles, faucets, cell phones, computer, laptop, light switches, refrigerator handles, regular phone...the list is endless and the germ-phobia is contagious (lol!). There is just no way to wipe everything your hands touch in the course of a day! So I do my best and try not to think about it too much.

1600 - Afternoon meds. Temperature taking...pray there is no fever. Breathe a sigh of relief when the reading is low!

1700 - Time for a dose of Zosyn. Morph into Clara Barton. Gather supplies, gloves, masks, alcohol preps, eclipse ball (also known as snot ball, snowball or sweaty ball!) Hook Nick up to his medicine and wait for the magic to happen.

1730 - Time to unhook and swab and flush and clamp.

2000- Is it really only 8PM? Why am I so tired? Dinner - what to eat? What will Nick eat? What would be appetizing? Is that POD still on my lawn? How much stuff is out there?

2300 - Nick usually goes to bed early. (This is early to me, but late to morning people) At this point, I start whatever studio work hasn't been done up to this point. I like to watch Letterman and sometimes, Craig Ferguson. I don't know what I will do when all of my TV shows come on next week.

0200 -Time to finish up, clean up, head upstairs to my comfortable mattress. When my head hits the pillow and my body is finally horizontal in the bed, it feels so good! Ahhhhh.....!

0500 - Get up. Argh...didn't my eyes just close. Time to take Nick's temperature and give a dose of Zosyn. I grab my bag of supplies and head to Nick's room to start up the infusion. I go back to bed for thirty minutes or so then get up and disconnect and stagger back to bed.

0600 - Hopefully, I am back to sleep by now. Sometimes it is not easy to fall back asleep, but the 0900 alarm comes way too early! My REM sleep seems non-existant. Hopefully, this won't be for too much longer as Nick's ANC count today was 794! If he continues to trend upward, they will discontinue the Zosyn tomorrow...keep my fingers crossed for that one. I don't feel so bad when the nurse practitioner tells me how hard the Zosyn runs are on the caregivers. It's like having a baby in the house and waking up for the 4AM feeding. Note to self...no babies!

0900 - To quote a favorite milblogger...swish, rinse, repeat!

There's No Place Like Home

Nick is home! I got a call from Nick on Monday morning..."Mom, the doctors said I can come home!"

So with his counts still low (ANC = 186) someone in the hierarchy of JHU oncology doctors decided that it was OK for Nick to head for the hills.

So eight hours and three suitcases later, Nick is home. Nick was very excited to be able to leave the hospital and progress to the IPOP phase.

Nick will be getting IV antibiotics at home every six hours, which involves me getting up at some unholy hour in the wee hours of the night (0500). It's a good thing I love this kid. We have to be back in IPOP in the morning for his first appointment. This will be an everyday thing for a while. It is late and I must go to bed. I will post more later today. Let the happy dancing begin!

Another Day

Sometimes the sadness comes.
Energy rushes from my body like air from a balloon.
Reality hits me like a hot desert wind
and saps every ounce of strength.

What have they done to my strapping young son?
Someone help me find him...I want him back.
Sometimes it is painful to watch.
Why couldn't I protect him from this?

He is grumpy and ornery.
He accuses me of the same.
We fuss at each other.
He is feisty and stubborn and looking for a fight.
He wants to be strong and well again.
He is so weak taking a shower exhausts him for the night.

He wants to eat so badly and yet his body is not cooperating.
Now his taste buds are wearing a sign that says, "Out of Order."
He says he wants apples and grapes and ice tea and apple fritters,
and yet he eats nothing.

I want to make him better.
I am powerless to do so.
I want to help him find wings, so he can fly again.

He is tired now.
He wants to come home.

Hurry Up and Wait

Counting down the days until Nick's counts come up is quite exhausting. We have now joined the ranks of soldiers who do a lot of this..."hurry up and wait" thing. Today Nick's WBC count was up to 120 and his ANC (absolute neutrophil count) was actually countable at "36!" These numbers are far from normal, but, this is the glimmer of count recovery we have been waiting for! Everyone may now get up and do their version of the "happy dance!" Go ahead...I'll wait.

There now, doesn't everyone feel a lot better? In order for Nick to go to IPOP (the next step in the process), his ANC must be 500. We still have to wait and see if Nick is going to be a roller coaster or a rocket. If you are a roller coaster, your counts go up and down and up and down ad nauseum. This makes everyone want to puke because we don't know from one day to the next when the ride will be over. If you are a rocket, your counts just take off and go shooting up so fast they can't write your discharge orders quick enough. We are hoping for the rocket! The doctors are very encouraged and have even mentioned that it is possible that Nick might be able to go to IPOP by mid-week if we have lift-off. Hey!!! No happy dance yet! That would be getting way to over-the-top, way too soon!

Nick and I have been dutifully sitting in his cell (I mean room), like all good prisoners (I mean patients and visitors) do! Nick has been playing Wii and games on his computer. I have been equally absorbed reading all my favorite blogs and updating my own. We are quiet...the air punctuated by the occasional swear word from Nick as he blows a game or runs his Mario Kart into a tree. Nick remains on contact isolation. So I sit here garbed in my hazardous waste disposal outfit. I look like a mad scientist and I feel like I will explode if I get any hotter or my purple-gloved hands get any sweatier.

The nurse brought Nick his "Preparing For Discharge" booklet for some light bedtime reading. Actually it is mostly stuff we already know from his prior discharge from 5C. We are getting to be pretty old hat at this stuff. Boredom is an interesting concept, but, one I will gladly except in lieu of the myriad of other bad medical stuff that could be happening instead. My biggest concerns right now are getting Nick to shower, eat and exercise. Praise the Lord and pass another heaping portion of boredom our way.

Please keep the prayers, good vibes and happy dances coming Nick's way. He is not out of the woods yet, but, thank God we found the compass.

Birthday at the Hop

Nick is feeling a lot better these past few days. He is once again playing MarioKart on the Wii game system...a good sign that he has begun to recover from his chemo and BMT. We are still waiting for signs that his bone marrow has engrafted. His white count was up enough to get everyone excited...a small blip on the BMT radar. It is to soon to tell if it is real, but, we are keeping our fingers crossed. Today is Nick's 26th birthday...I reminded him that I went into labor at midnight and finally had him eighteen unmedicated "natural childbirth" hours later! He was born at 1930 hours on September 11th and has been a joy in my life ever since! Nick wanted to be going home today for his birthday present. I don't think his neutrophils got that memo! We will continue to wait it out and pray that no germs find their way to his room. Whenever we know something, you will hear it here. No fevers and nothing much new to report. As the doctors and nurses keep telling us, "no news is good news." Nick can't really eat any cake right now, so Kate will bring some milkshakes from Maggie Moo's...yum! While Nick continues to lose weight (down to 161 lbs. - that's fourteen pounds for those of you who are counting) I fear I will be the size of a dirigible between lack of dancing, too much sitting, and too much fatten Nick-up food! I need to start a workout regimen stat! Note to self: start exercising! Where in the hell are my tap shoes? It is late and I must sleep.
P.S.- Did I mention that my dryer has decided to have a nervous breakdown? So, here I go off to the laundromat after I get home from hospital tonight. Watch scariest people in the world on "America's Got Talent" while I watch my clothes flip and flutter in a dryer that works really fast. I do a super fold and pack up, carry my basket to car, hop in, turn key.....nothing! Car has now had a nervous breakdown as well. Call man of the house, who comes to provide a jump. We successfully start car, but, only temporarily. It is now kaput in the driveway for the night. Now I am having a nervous breakdown. To quote Nancy Kerrigan as she gripped her shin on the side of the Olympic ice rink...why? Why? Why? WHY?????????????????? Just had to vent. Peace out.

Rockin' In The Free World

Here is the flyer for Nick's benefit concert! Nick's girlfriend Kate has a sister, Megan, and her boyfriend plays in one of the bands. The two of them organized the whole thing. In addition to the concert, there will be a silent auction to help raise money for Nick's hospital expenses. Still waiting to hear if the concert is all ages. Tickets are available at the door. So come on out and support Nick and his fight against leukemia!

Luking Gude

The sky outside Nick's hospital room looks this blue right now, except there is not a cloud in sight. The weather today is beautiful and I wish that Nick could take a brief journey outside into the sunshine. He is out in the halls doing his laps with Kate.

Today's update:
1) NO fever! This is a good thing.
2) Not much appetite...this is a so-so thing.
3) Mouth sores still bad...tongue less swollen. Eating still difficult.
How much jello can one person eat? Finding creative ways to prepare soft/puree/liquid food has been a challenge to my sorely lacking culinary skills.
4) NO sign of white count coming back yet, but it is still very early.
5) Nick's birthday deadline to go home is approaching, so take heed all you neutrophils and get to reproducin'!
6) Nick's stomach is making horrible sounds...like it is filled with evil spirits that need to be expunged. I have named his stomach area the Poltergeist Zone!"
7) Nick received platelets and packed red blood cell transfusions yesterday, so those counts are good.
8) Haven't seen hide nor hair of a doctor this weekend. This place is like a ghost-town on the weekends. But, I like it because it is easier to get down here and the parking garage is empty.
9) Nick has been a real trooper. He looks good to me, but, he says he doesn't feel good. But, to quote Billy Crystal in the SNL sketch, "Fernando's Hideaway" "Better to look good than feel good!"

Down & Out

Friday was a rough day. I had called Nick in the morning...he always tells me he is "fine." I show up at the doorway of his room to find "the sign" on the door. The sign I didn't ever want to see on Nick's door...saw them on plenty of other people's doors,but, stay away from our door. Well, this was not to be the case. The sign reads "CONTACT PRECAUTIONS" meaning everyone who goes into the room must scrub, put on gown and gloves and stay in this get-up until you leave the room again. The gown is hot and the gloves are even hotter. Nothing like sitting around in a paper gown and plastic gloves for ten to twelve hours. One of Nick's cultures came back positive, and therefore, visitors must wear all this garb to keep from carrying the germs out to other patients or areas on the floor where other patients may come into contact with them. The fact that he has this positive culture is also somewhat concerning to me, although, I am told by Dr. J that "this is all to be expected."

Nick's mouth sores seems to get worse each day. His cheeks, gums, and tongue are all swollen and his speech is funny because of it. He is doing his best to get soft foods and liquids down but it is not easy. He seems to be handling the pain aspect of it, but, I fear that it will get worse before it gets better. He had a fever today of 38C, which required that he be "cultured." Anytime Nick spikes a fever he has to have blood cultures drawn from his line and his arm, CXR, and cultures of other body fluids that shall remain nameless. Because of the fever, they added new antibiotics to his bug-fightng arsenal...Zosyn and Vancomycin. While receiving the Vancomycin, he started having an allergic reaction by turning red and rashy all over his head, neck and chest. He will now have to get Benadryl before each dose in order to limit his reactivity to the Vanco.

Other parts of his day were good, he had a visit from a college buddy, which is always good to take Nick's mind off the medical stuff. Kate came and brought some lemon Italian ice, which Nick enjoyed very much. Kate, Nick & I watch the "Stand Up 2 Cancer" show on TV. It was very good, but, very sad at the same time. We all got a little smutney watching and hearing so many stories about how cancer has affected and touched the lives of so many people.

I got Nick's permission to put some glow in the dark stars on his wall. I created a lovely milky way, so he can look at the stars and dream good dreams. It was so hard to leave this very quiet, glassy-eyed, hurting and scared puppy tonight. I can't even feel his forehead or give him a hug without a purple non-latex glove between coming between us. I always tell him to call me anytime in the middle of the night...but, so far, he hasn't. I hope that is because he is sleeping. As I turned out his room lights and left my dear son alone in that room, my heart was heavy and my tears fell silently into another dark night.

"Count your nights by stars, not shadows; count your life with smiles, not tears." ~ Italian Proverb

High & Tight

Sorry I have not posted in a few days. Things have been just a little bit crazy lately. So here is the post I started yesterday...

Today (yesterday) Nick gave himself a military haircut…by pulling out all his hair! The process of Nick losing all of his hair has started again for the second time. He has managed to sculpt himself quite a look, by removing all of the hair from his beard area, his mustache, and the sides and back of his head. Nick said he wasn't ready to pull out the top, so he now looks like he has joined the military, at least until tomorrow (when all of his hair falls out), then he will look like he belongs to the fearless army of people battling leukemia and recovering from their bone marrow transplants!

Nick has been doing great,despite feeling quite yucky. The side effects of the chemo have caught up with both ends of his GI tract; although, he seems to have gotten through the worst of the nausea and vomiting. His appetite and his “stomach” are not right and probably won't be for a while now.

Mouth sores have moved to the front burner as the #1 problem of the day. These areas are very painful and make it difficult to chew, eat and sometimes even drink. Nick will be on a liquid/soft diet until these sores go away. This usually happens when his counts start to rise (which has not happened yet.) His food choices will be limited due to his inability to chew anything with any real substance to it and I am concerned because he continues to lose weight (down ten pounds in the last five days!)

Nick's white count has pretty much bottomed out – down to 70 (and today 50…basically zero!) Dr. J (attending physician) is pleased with his progress to date and he has no specific concerns. So we wait, watch, and wonder when the magical day will arrive that Dr. J will come in and announce that Nick’s new marrow has finally started to work. Oh what a joyous day that will be! Nick is still insistent that he will be going home on his birthday, September 11^th and the doctors seem more willing to concede that he may be right, despite no factual evidence to support this theory. I pray that he is right!

Tic Toc

"This time, like all times, is a very good one, if we but know what to do with it." ~Ralph Waldo Emerson

They say that time flies and time waits for no man and a stitch in time saves nine and there is no time like the present and time heals all wounds. When you arrive somewhere late, someone always says, "It's about time!" Time provides the ever present countdown on the rest of our lives.
I always need more time, I can never get enough of it. I need to buy some time...mass quantities of it. When I am at the hospital, the minutes go by. I don't mind. I consider each one a precious moment that I will never get back. Time spent with my son. Time spent with Kate & Nick together, trying to make a go of a relationship within the confines of an oncology unit. Time to see my daughter and my husband as we pass like ships in the night and the morning and the afternoon. Time spent quietly, reading, talking, relaying stories. Time spent laughing and finding humor even in a crazy place like a hospital. Good times. Not too many bad times....keep the bad times away! Time can be a relentless task master. Why do they have expressions like "the ravages of time?" Should I blindly spring forward or cautiously fall back? I see the hour glass with only a few grains of sand left. Poor Dorothy! Damn those flying monkeys!

Nick's counts have started to fall and the waiting continues. Waiting for the transfusions to start. Waiting for his appetite to return and waiting for the pounds to stop dropping off. Waiting for Nick's donor marrow to "engraft." Waiting for the other shoe to drop. How much time will it take? Time is not on our side in this fight. The longer Nick goes without an immune system, the more danger there is from infection. Isn't it time to go? Hurry new marrow...there is no time to waste, I want my boy to be free again!

Story of Ganesha

Nick's cousin, Jillian, went to India for a month this summer to study dance in India. While there she learned about Ganesha -"the mover of obstacles." Since Nick has a rather large obstacle to move right now, she decided to bring him home a statue of the Hindu deity, Ganesh. Below I found an explanation of all his arms, and the reasons for all the different things he is holding in his hands. If you want to know why he has an elephant head, you will have to look that one up for yourself.

Ganesha — the elephant-deity riding a mouse — has become one of the commonest mnemonics for anything associated with Hinduism. This not only suggests the importance of Ganesha, but also shows how popular and pervasive this deity is in the minds of the masses.

The Lord of Success
The son of Shiva and Parvati, Ganesha has an elephantine countenance with a curved trunk and big ears, and a huge pot-bellied body of a human being. He is the Lord of success and destroyer of evils and obstacles. He is also worshipped as the god of education, knowledge, wisdom and wealth. In fact, Ganesha is one of the five prime Hindu deities (Brahma, Vishnu, Shiva and Durga being the other four) whose idolatry is glorified as the panchayatana puja.

Significance of the Ganesha Form
Ganesha's head symbolizes the Atman or the soul, which is the ultimate supreme reality of human existence, and his human body signifies Maya or the earthly existence of human beings. The elephant head denotes wisdom and its trunk represents Om, the sound symbol of cosmic reality. In his upper right hand Ganesha holds a goad, which helps him propel mankind forward on the eternal path and remove obstacles from the way. The noose in Ganesha's left hand is a gentle implement to capture all difficulties.

The broken tusk that Ganesha holds like a pen in his lower right hand is a symbol of sacrifice, which he broke for writing the Mahabharata. The rosary in his other hand suggests that the pursuit of knowledge should be continuous. The laddoo (sweet) he holds in his trunk indicates that one must discover the sweetness of the Atman. His fan-like ears convey that he is all ears to our petition. The snake that runs round his waist represents energy in all forms. And he is humble enough to ride the lowest of creatures, a mouse.