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

Rain In My Head

Rain by Shel Silverstein

I opened my eyes
And looked up at the rain,
And it dripped in my head
And flowed into my brain,
And all that I hear as I lie in my bed
Is the slishity-slosh of the rain in my head.

I step very softly,
I walk very slow,
I can't do a handstand--
I might overflow,
So pardon the wild crazy thing I just said--
I'm just not the same since there's rain in my head.

The Days Before

Sorry to leave everyone hangin' for a while there. We have all been at the beach for a few days. The latest news is that Nick has gotten his admission date for the BMT! He will be admitted to John's Hopkins on August 21st. The tentative date for "Day Zero" is August 27th. And thus, Nick's long journey will begin. Despite knowing this was coming, my stomach sunk when Nick told me he had heard from Holly. (He got the call right when he arrived at the beach on Friday.) While I am glad we have a date now and this initial uncertainty is over, I am scared out of my mind to know that he actually has to start this process and there is no turning back. Once Nick returns from the beach, he will begin his pre-transplant testing. He will be busy running back and forth to Hopkin's getting all the required tests and procedures that are necessary prior to his admission to the hospital.

I spent a restless night at the beach in a strange bed...I cried some and tried to tell myself to suck it up and deal. I am worried as any parent would be and I haven't figured out the best way to handle all this yet. My "to do" list is long and I am not able to relax much. Barbara & I are still working on hiring teachers and the sooner I can get this ironed out the better I will feel.

I will be home from the beach late Monday night. I will be able to say more at that time. I am literally on borrowed time here at the Bethany Bytes internet cafe. Time keeps on ticking....ticking....ticking....into the future.

Please keep Nick in your thoughts and prayers.