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.

Obstacle Obliterated

Nick is doing well. Today was a good day. "Extreme Make-Over" at the Pippen household is in full demolition mode. I have been warned to stay away, so I will be sleeping under the Hanover Street bridge. It has been a long, long, long day in terms of hours; but, all worth it, as Nick has managed to get through another day without the side effects of today's chemo catching up to him. He has not eaten much today and has lost about five of the precious pounds it took us so long to put on him. I just have to think of it as "cutting weight" for a big fight! If those crazy wrestler's and MMA guys can do it, I guess he can too. Kate did the laps with him tonight and he is sporting a new "adapted" shirt that Aunt Barbara was able to finish. Nick will receive his last chemo dose in the wee hours of the morning and that will be one more obstacle obliterated! (Those are Nick's words) Also, in Nick's words, "Me and ganesh... f*cking things up!" Remind me to tell you the story of the ganesh! Anyhoo, I am still at the hospital and my cardboard box under the bridge calls.
P.S. - The cat has nothing to do with the post...I just thought he was cute.
P.S.S. - Young At Heart dedicated to Infantry Guy/Prankster!

A Day Later

What a difference a day makes! Nick felt much better today. He was able to eat a little more and was up and about in his room and did his laps. He had enough energy to argue with Mom about climbing up on chairs to fix a broken VCR/DVD player and announce with a pout that he was "bored." He has another day of rest tomorrow, so I am looking forward to a good day.

Dr. Jones, the current oncology attending big wig, stopped by briefly. He announced that basically all of Nick's remaining blood cells are "dead" "but they just don't know it yet!" Well...OK? Thank you Dr. Tactful. (It was somewhat humorous though, in it's own macarbre way) I really do like Dr. Jones and Nick knows his son (who is around Nick's age). Sometimes I don't think the medical people think too much about what they say or how they say it. We are still waiting for Nick's counts to drop (not that we want them too) but we know that they inevitably will. There is no undoing chemo and therefore, it is only a matter of time before we see this reflected in Nick's blood work. In the meanwhile, Nick has a brief respite, before he has to receive two more days of the Cytoxan. Unfortunately, it will be hitting him throughout the weekend, so he most likely will not feel well again for a few days. I cannot believe it is Labor Day Weekend. It doesn't seem like a holiday to me. It is late and I must go to get some sleep.

The Bag of Life

Well the day started a little on the rough side for Nick. He did not feel well for the better half of the day. He is still fighting the nausea and vomiting side effects of his chemotherapy. Despite an arsenal of anti-emetic medications, nothing seems to really do the trick. Unfortunately, Nick has not been able to eat or drink much of anything due to the nausea. He slept fitfully throughout much of the morning and early afternoon (although he said he slept great last night).

Nick continues to have the hiccups which can be a side effect of the chemo drugs irritating the diaphragm. We have tried several "old wives tale" cures which have not worked. We have all threatened to scare the crap out of him in hopes of driving them out of his body. But, to this point, we have not accomplished this mission. They will randomly disappear for no reason and return just as unexpectedly, like a relative you don't really like showing up on your doorstep in the middle of the night.

The big news is that Nick received his bone marrow transplant earlier today. As is often said, the whole process is very anti-climatic after all the hullabaloo leading up to this day. The lab tech arrived on the floor with the precious cargo in your standard Igloo ice cooler. Nick and I had just left the room to take a walk when we were told that "it was time." With the enthusiasm of a death row inmate, Nick returned to his room and got ready to get hooked up to what I am now calling the "bag of life." The marrow is in an IV bag, just like a blood transfusion. The volume of the marrow transfusion can vary, but in Nick's case, it was quite a lot (1.6 liters) therefore, it took about four hours to infuse the entire amount. The main concern throughout the infusion is a transfusion reaction. Nick has been stable with no problems thus far. The other exciting thing for me was that the marrow donor was the same blood type as Nick (A+) so Nick's blood type won't be changing! If the marrow's blood type was different, then eventually Nick would have the same blood type as the donor, and the Mom in me didn't like that idea so much. It is weird what things bother you when you are going through this process. Nick's night nurse just came in to check on Nick and his bag of life is almost completely infused! So far so good. Now we wait and hope and pray for all good things to come!

In the BMT world, the day of one's bone marrow transplant is considered to be your "new" or second birthday. Nick wasn't too thrilled with the idea unless there were presents involved...lol! Nick says he likes his birthday...so we didn't go overboard with the birthday theme. But, I guess I will just say for the record...Happy "BMT" Birthday" to my wonderful, strong son. I am sorry that anyone has to have a BMT birthday, but, if you have to have one, I guess we might as well celebrate the gift of life that has been given to all of us by another human being. Through the generous and selfless act of this donor, Nick has been given a second chance at life and hope for a cure! In that light, all seems right with the world for now. The waiting continues...

"Time goes by so fast, people go in and out of your life. You must never miss the opportunity to tell these people how much they mean to you." ~Author Unknown

NASCAR & Mr. Clean

Thought I would post a quick update. Nick is doing OK...having some nausea, vomiting and fatigue related to the chemotherapy medicines. All things considered he is doing pretty well. Nick has not been able to eat a whole lot since yesterday around lunch time; but, that is to be expected and he has basically been sticking with liquids and clear fluids as tolerated.

Nick & I just came back from a walk...he did thirty laps around the floor. We have pedometers to track our steps. Nick's pedometer had over one thousand steps, and he was walking so fast I thought his IV pole was going to pitch over onto the race track. We are renaming it the Daytona 500 (at least I am renaming it that, as I am a NASCAR fan). I am sure Nick will choose a Formula One track as he and his Dad are into the Formula One racing. Nick is a tall guy with a long stride and I was running to keep up. Good exercise for me too. We are going to bring in our yoga mats so we can stretch.

I just swiffered the floor in his room and I do not even want to tell you the color of the swiffer pad when I finished. Yuck. I swear I haven't seen a housekeeping person in here once. I keep asking Nick if they come in and clean and so far he has said no. Oh well, I have supplies and we will clean as needed. I wipe down his room every night before I leave, handles, phones, laptops, TV remote, call bell, light switches, chair arms, bedside nurse buttons, bed rails, room phone, bedside table, regular table etc. As you can see there is a lot of wiping to be done. Nick is in the shower as I right this, yeah! He is trying to do everything he is supposed to do so he can get out of here ASAP!

Tomorrow is the big day! Still don't have a time or any information on when the actual transplant will happen. I hope to find out more later this afternoon when rounds are over. I will post again tonight to update everyone. Keep the faith.

Believe

The last four days have passed quietly. Nickolas will receive his last Busulfan dose on 8/25/08 @ 0100 hours. The nurses have marveled at how well he has been doing. Nick will get his first dose of Cytoxan at 0600 hours this morning. Cytoxan is a random big gun, not too particular about which cells it damages. Nick will have to receive lots of extra IV fluids to flush the kidneys and bladder and special medicine, called MESNA, to protect his bladder from the side effects of the Cytoxan. Nick has been doing very well. His appetite has been good and he has been doing his "laps." The nurses have told him he needs to keep up with his exercise, as this really helps with the healing process. He also has to be sure to do mouth care every 4-6 hours to minimize the germiness of this area. In addition, he has to shower every day to keep the Staph and Strep germs from taking up residence on his skin.

Nick is not too thrilled about all this showering, but, he knows this is something he must do to stay healthy as possible. It takes a while for him to motivate to get into the shower, but, once he is in, he usually comes out feeling refreshed and clean!

Nick's catheter site is healing well and looks very good. Aunt Barbara is busily fixing a bunch of shirts with snaps on the right shoulder so he can run the hallways wearing his "regular" clothes.

Nick has been in good spirits...the days are long and boring already! I guess I could take boring if that was the worst thing that Nick has to deal with over the next month or so.

Don't have much to say right now...it is all a bit surreal. I am just waiting and hoping for everything to turn out ok. Just keep repeating...everything is gonna be alright!

Just Chillin'

Believe it or not, today has been a pretty good day all things considered. Nick & I arrived down at the "Hop" around 1015AM. Nick was off to get his line and was up in his room on 5B by 1230PM. The insertion site for the line is painful, but, this will subside over the next day or two. He now has two purple ports hanging out on his chest that will serve him well in the next few months. The great part is no IV sticking! All Nick's medicine and lab draws, transfusions etc. go into and come out of this double lumen wonder. The main risk of this line is infection. It must be kept immaculate and everyone who uses it must use sterile technique. So say a few extra prayers to the patron Saint of Central Lines! Nick is wearing his specially made t-shirt with the snaps that allow him to get in and out. The t-shirt was made by his Aunt Barbara (with oversight by Nurse Diane). We plan to work on the prototype while Nick is here and maybe start a new business, providing hospital adapted real clothing for people who want to wear something other than those nasty gowns.

Upon Nick's arrival to his room on 5B, (Room 14) we discovered we have a lovely view of the patient rooms directly across from us. We can look across and see in the windows of the other patients and wave. We figured we should make a sign to put in the window that says, "S.O.S! I AM BEING HELD CAPTIVE ON 5B...SEND HELP!" If you go into the bathroom, there is a great view of much of Baltimore, and Nick fully intends to enjoy the view.

After the usual barrage of test, lab draws, paperwork, orientation to the unit and more, Nick got his first dose of chemotherapy. The name of the drug is BUSULFAN and it is a very heavy duty medicine. It is meant to know out Nick's marrow completely! He has to receive seizure prophylaxis with Dilantin (a rare side effect, but, yet they still treat for it). He will have to be on the Dilantin for six days and then they will be able to take him off. He will begin his Cytoxan
doses on Day #3 & Day #4. This chemo regimen is meant to knock Nick's marrow out of commission and bring an initial halt to the manufacture of the bad cells. Later, when Nick receives the donor marrow, the donor's marrow will also "seek & destroy" any bad guys that are still hanging around looking to cause trouble.

Right now, Nick still feels good. I am looking forward to spending quiet time with Nick over the next few days. My goal is to keep him fat and happy. I am doing my best to take one day at a time. If I don't think too much about the big picture, I would say this day has been a piece of cake. I am so thankful that Nick has been able to ease into this process without too much fanfare. For now it is late and I will be heading home soon. I do not like leaving my boy here in the hospital. But, for now at least, I know he is doing OK. Until tomorrow...sleep tight and don't let the bed bugs bite.

Drink The Wild Air

Reading my favorite milblogging soldier guy...AKA Suspect, brought up the subject of swimming. And since the whole world is still all lathered up with Phelps Phan Phrenzy, I figured I would go off on a little tangent about swimming.

I have many fond childhood memories of time spent swimming. One of the best things my parents ever did was join the local swim club.
Every summer all six of us were like lemmings to the sea, literally. We lived at that pool. Spent hours perfecting our strokes..."butter, back breast, free! The freedom found in water being the best part. Pushing off the wall and feeling the water stream past. A dolphin kick to the bottom, suspended in time and space, weightless.

"Live in the sunshine, swim the sea, drink the wild air." ~Ralph Waldo Emerson

Night swimming was always the best. The air cool, the water warm, a silky cocoon enveloping us in a silent world where for a moment all was still and yet, moving at the same time. No fear, no worries, a respite for the weary. I think it has been way too long since I have been swimming.

"Sometimes God calms the storm. At other times, he calms the sailor. And sometimes he makes us swim." ~Author Unknown

Victory of the People

It is hard to believe that twenty-five years ago to day, I was very pregnant and expecting my first born son. Nick's due date was August 20th! Being the stubborn "Leo" that he is, he decided to delay his entrance into this world for an additional three weeks. Nickolas was born on September 11th, 1982. Of course, now he is officially a Virgo, but, he is still a stubborn Leo.

I am not really into astrological signs, but, they can be amazingly accurate. So on this day of his BMT class, my thoughts have turned to happier times, although eighteen hours of back labor during a time when giving birth "naturally" was in vogue, was not really a very happy experience. I strongly urge anyone I know to get the epidural! After those eighteen hours of extreme pain, it was determined that my big-headed son was not entering the world via normal pathways. No, this birth was going to cause me to have a lovely scar way before the doctors were kind enough to give you a bikini incision. So my three weeks overdue son was born on September 11th at 1930 hours. He was a big one, weighing in at 8lbs. 11oz. He was never really tiny like the little one in the picture. Nick was three months old on that day he was born, all wide-eyed and bushy-tailed, with a curious face, a very loud cry and very big hands and feet. His legendary long toes were evident right from that very first night and I found myself missing the kicks I would feel when he was cradled safely inside his Mama.

When I finally got to hold him in my arms, it was love at first sight. I remember thinking to myself, "Now I know why mothers name their children "Angel." He was my little angel, but, I thought better of naming him that. He was supposed to be a "Matthew" and he was actually without a name for two or three days. If there was a reason that we named him Nickolas, I don't remember. But, it has always suited him. The name means, "victory of the people" and Saint Nicholas was known as the patron saint of children. I still believe he is a mix of Leo (generous, warmhearted, creative, faithful and loving) and Virgo (modest, shy, reliable, intelligent and analytical). Be strong my son and I will be strong for you; between my Aries and your Leo we have enough stubborn to stop that leukemia in it's tracks. I love you forever and always.

Soul Returned

I sent my soul into the invisible,

Some letter of that after life to spell.

And by and by my soul returned to me

And answered, I myself am heaven and hell.

~Omar Khayyam ( Rubaiyat)

Leave The Light On

Better to light a candle than to curse the darkness. ~Chinese Proverb
(When we go to the hospital next week, I am going to take a night light to ward of evil spirits.)

People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is light from within. ~Elisabeth Kübler-Ross
(Nickolas and Sara are my stained-glass windows; each beautiful in their own way. They have had their share of darkness and the light within them has revealed their true beauty.)

The sun shines and warms and lights us and we have no curiosity to know why this is so; but we ask the reason of all evil, of pain, and hunger, and mosquitoes and silly people. ~Ralph Waldo Emerson
(Why must we have mosquitoes? Silly people...maybe?)

Though my soul may set in darkness,
It will rise in perfect light,
I have loved the stars too fondly
To be fearful of the night.
~Sarah Williams

Leave the light on for we will soon be home. Guide us to safe harbor and keep us from crashing on the rocks we cannot see in the darkness.

Hugs Good, Monkeys Bad

One week from today, Nick will be admitted at Hopkins. He will be having a (central line) catheter placed in his subclavian vein and he will begin his chemotherapy regimen. I am having trouble dealing with this reality right now and it seems I am unable to summon the simplest of thoughts let alone compose a coherent blog post. My mind is numb and I am functioning (poorly) in an emotional vacuum. The combined effects of late nights (Olympics watching), restless sleep, and early mornings (gotta get up, too much to do) have no doubt led to the zombie-like fog that I have been attempting to slog through.

The "to-do" list keeps multiplying like the Dugger family. Knowing that I have only five days to complete so many tasks has left me immobilized by the enormity of it all. There are way too many plates starting to teeter up there and I am just about past caring how many of them come crashing to the ground.

Getting things settled at the studio has been my biggest concern and at least with regard to covering my teaching hours, I will soon be able to put a check mark in that box. The house cleaning, organizing, pitching and preparing for "Ty Pennington" has brought the task list to "a whole nova level." I keep praying to the cleaning Gods for divine intervention.

Nick has been doing very well physically, but, emotionally I would say things have been a little rougher of late. I suspect that he is also feeling the weight of what is to come. My usually happy go-lucky son has been replaced by a quieter, more somber guy. When a smile does come to his face, I see my old Nick there. The hugs are still real good and I look forward to them each day. Sometimes, it is hard for me to get a read on his feelings and what he is thinking about all of this. I also then feel guilty that I cannot spend more time with him like I want to because I am busy spinning all these stupid plates. I guess at the core of it all that is what really bothers me the most; and the sands keep running through that hour glass so fast and I can hear the flying monkeys coming.

Happy Trails

I am happy to report that Nick has finished the first two days of his testing. After what he has already been through, these two days were a piece of cake; nothing painful or prolonged. Yeah! He met with a wonderful nurse practitioner named Valerie who gave him her stamp of approval. She was so nice, understanding, and positive.

Nick wants to go hiking and camping before he goes in for his transplant. I am not sure if he will actually be able to find the time to go. He told me he wants to go to the Great Smoky Mountains in Tennessee. I asked him why he can't just go out in the yard and pretend he is in the Smoky Mountains (see picture). I am not a hiker or a camper, so I don't get the fascination. But, Nick has always loved the outdoorsy, nature thing. So we will see what he decides to do. If it makes him happy, I will be happy for him to go, only preferably not so far away.

Things are busy for all of us. Glenn is trying to get ready for school which begins on August 25th and he will also be starting online Master's classes, just to add another layer of chaos. Sara is taking a summer course at UMBC and will soon start fall classes. She interviewed today for an internship that will pay her a stipend for school. Barbara & I are close to tying up the loose ends on the revamped DDC schedule. We have hired one teacher and hope to have two more by end of week.

We are trying to come to terms with all of this, each in our own way. It is hard to explain what it is like to be on this journey. Nick's diagnosis is difficult and the treatment will be long. As we walk together, we discover so many physical, emotional and spiritual layers we must acknowledge; each one to be unfolded and tenuously explored; finding ways to stay strong as we come to accept this that we have been asked to carry. It is very late and I must try and get some sleep. Please keep us in your thoughts and prayers. Goodnight all.

Better

The list came via email. It wormed its way into our home without fanfare. "Oh yes...here it is." And believe me, this ain't no laundry list or grocery list or wish list or to do list. Because there is nothing on this list that strikes my fancy and I am usually a lover of lists. This list will go on my list of things not to do ever again.

Day #1 -diagnostic lab studies=blood drawing in massive quantities...CT scans of chest and sinus...chest X-ray...EKG.
Day #2 - Heart scan - involves IV's, contrast dye and nuclear medicine scanning machines. Pulmonary function studies - checking lungs. History & physical with nurse practitioner and
more diagnostic lab studies. (why? Couldn't get enough the first time?)
Day #3 - More diagnostic lab studies (you're kidding right?) Grab a pencil and paper for the Bone Marrow Education Class (and there will be a quiz)
Day #4 - More diagnostic lab studies (and they wonder why people need blood transfusions), meet with more doctors and nurses - sign consents, do paperwork, search for divine guidance.
Day #5 - Go to jail, do not pass go, do not collect $200. Proceed to the CVDL (Cardiovascular Diagnostic Laboratory) for placement of your new best friend...Mr. Hickman (otherwise known as the central line through which all medicines & transfusions will go in and all labs will come out) Go to 5th floor...pick your new home for the next 30-45 days. And so it begins....

Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad. ~ Henry Wordsworth Longfellow