Poem

"Ode on the Whole Duty Of Parents"

The spirits of children are remote and wise,
They must go free
Like fishes in the sea
Or starlings in the skies,
Whilst you remain
The shore where casually they come again.
But when there falls the stalking shade of fear,
You must suddenly be near,
You, the unstable, must become a tree
In whose unending heights of flowering green
Hangs every fruit that grows, with silver bells;
Where heart-distracting magic birds are seen
And all the things a fairy-story tells;
Though still you should possess
Roots strong consoling bark
To love and caress.

~Frances Cornford

Compound Interest

Long day.
Testing done.
Drunk on Fentanyl
That was fun.
Listened as the
Doctor spoke.
Tried to fix what wasn't broke.

Early signs
point to West
What will be results of test?
Could be good,
maybe great.
Moving forward, cannot wait.

Hanging, gliding,
slipping, sliding,
through the Weinberg,
life is winding.
Give a little, take a lot.
Keep your soul
That's all you've got.

Wheel and deal.
Negotiate
Borrow time.
What interest rate?
Heading home
to rest and play
Safe and sound
another day.

~bigD

Starfish

Lie on the floor on your back and stretch out your arms and legs in the shape of the letter "X" and you have the beginning of my modern class. The dancers know the exercise as "Starfish." It is part relaxation, part port de bras (moving the arms), engaging the center and breathing!
When we finish the arms, we roll on the floor like creatures on the bottom of the oceans. We roll slowly and languidly feeling the current carrying our bodies along until we run out of space. Then we roll back in the other direction until we find our home base and return to the starfish position. Very relaxing....

Not that I have my mind right, I guess I will leave an update on Nick. For now this will be a just the facts kind of post.
1. It was discovered that Nick has some kind of GI bug that comes from being on all the antibiotics. This is the cause of the belly pain and some of the nausea. He was started on
a new medication to get rid of the creature from the deep lagoon. After 24 hours on the med, he seems to be feeling a little better.
2. The other issue of concern was the CT scan that was done last Thursday. The results showed some changes in the small and large intestine, all of which could not be explained by the belly infection. Therefore, the doctors want Nick to have a colonoscopy to get a biopsy and check for signs of GVHD. Nick is scheduled for this test on Monday morning.
3. Because of all these developments, Nick transfer to clinic and the removal of his line were put on hold. (I think I already wrote this part)
4. Nick had to go back to IPOP on Saturday to get the once over....he got some IV fluids, some nausea medicine and a nap. He spent some time with Kate, which is good medicine all by itself.
Nick felt a lot better this afternoon with less belly pain and more energy than he has had in a while. He still has "the look" in the face, but, the doctors don't put much store in that. I, on the other hand, know that when I see that face, all is not well on one level or another.
5. Nick's counts today were OK, slightly down on the WBC and ANC counts, which could be attributed to fighting the gut infection that he has currently. He has no fever, thank goodness.

Once again, the road is long and "bumpy" and my shock absorbers are needing to be replaced.
Excuse me while I go roll over the bumpy road and find my inner starfish.

Troll Bridge

Today was a long day. Nick and I were up very early to head down to Hopkins. Even though Nick was supposed to be officially "discharged" out of IPOP by the end of this week, but, he has been having a lot of stomach pain of unexplained origin. This in turn has started another whole cycle of nausea and random vomiting.

I was glad to be going to IPOP today so Nick's NP (nurse practitioner) could figure out which troll was trying to come out from under the bridge this time. The bone marrow biopsy (the original intent for this visit) went as well as can be expected and actually took a back seat to the rest of the day. Another attending in a long line of random attendings who appear out of nowhere to offer their sage advice came in to look briefly at Nick. It was Dr. Kildare's (OPSEC) opinion that the Gleevac may be the cause of Nick's abdominal cramping etc. She was quite taken aback when I told her I would have to disagree with that assessment based on my 24/7 experience of living, eating and breathing with my son for the past five months. She sort of smiled/chuckled a little as she departed never to be seen again.

Fast forward several hours: the results of the CT scan of Nick's abdomen showed some potential problem areas. The current theories are either infection or possibly early GVHD. I can't face the explanation of GVHD and its myriad of complications, so maybe later for that epic tale. For right now, I feel like all the air has been sucked out of the room again. I want to cry and scream, but, I can't seem to muster the emotional energy to go there right now. They cancelled the removal of Nick's line for tomorrow, which makes me very sad as this was a milestone in my mind and I am sure it was for Nick too! The planned discharge from IPOP has been postponed indefinitely. Does anyone have a get out of jail free card I can borrow?

Nick calls this a bump in the road. I call it a pain in my heart.

I am tired of bumpy roads and bridges with trolls; even though you know they are there, they still scare the crap out of you when they jump out!

Sometimes

Sometimes things don't go, after all,
from bad to worse. Some years, muscadel
faces down frost; green thrives; the crops don't fail,
sometimes a man aims high, and all goes well.

A people sometimes will step back from war;
elect an honest man; decide they care
enough, that they can't leave some stranger poor.

Sometimes our best efforts do not go
amiss; sometimes we do as we meant to.
The sun will sometimes melt a field of sorrow
that seemed hard frozen: may it happen for you.

~Sheenagh Pugh

Another Day

As always it is late and I have decided to update which always takes longer than I think, thus depriving me of more sleep, which I feel I don't need but, I know I do. Today I did many things, but, felt like I got nothing done. Nick had a sore throat this morning. In any normal circumstance, a sore throat would be a small blip on the illness continuum. For Nick....not so anymore. Upon inspection, we discovered yucky white thingy-whozits in there. Called IPOP...doctor told us to wait and see what develops. It is most likely a cold virus, but, that can still be bad for someone with a completely compromised immune system. I hope whatever it is can be nipped in the bud. Time will tell.

In general Nick has been doing very well and moving forward at what seems to me to be a very rapid pace. While all signs point to good right now, the problem with leukemia, chemotherapy and bone marrow transplants is the unpredictable nature of its many side effects and complications. Due to the nature of the beast, it is extremely hard to plan anything ahead as one never knows from moment to moment when some new glitch in the works may appear. On the positive side:
1) Nick's counts have been steadily rising, which is a good thing. He has not needed any platlet or blood transfusions as both of the numbers have been solid. Nick's white count and neutrophil count also are also rising, so his new marrow is trying to do its job.
2) Nick's days in IPOP are numbered because he is doing so well, he will soon be "discharged" down to the clinic level. This means that the level of care and monitoring Nick needs has decreased and therefore he is ready to move on to the next step in the process.
This also has a downside...see "downside" discussion to follow.
3) Nick will be getting his "60-day" bone marrow biopsy this week. This is a somewhat unpleasant procedure that all BMT patients must have throughout there recovery. This will be Nick's second bone marrow biopsy, but, this time he will have sedation! Then we will have to wait to find out the results for a week or so.
4) If all goes well, Nick may also be able to get his line out at the end of next week!! This is also a mixed blessing, but, the biggest positive is that the infection risk from the line will be eliminated.
5) Nick's appetite is good and the nausea and vomiting thing seems to have taken a hike! Now hopefully, if I can get him to just eat full time for a few months, he can gain back all the weight he has lost! Taste buds are still somewhat messed up but we are figuring it out slowly but surely, what tastes good and what doesn't.
6) Nick is off the majority of the medicines he was taking which is great! The less stuff to muddy the water and make his liver work overtime the better!
Now for the "things that are still of concern" list:
1) According to the nurse who did the "discharge" teaching, Nick's immune system is like that of a newborn baby. He must remain super vigilant to keep from getting sick! His new immune system though better (i.e. counts are slowly climbing) is not by any means at full capacity. Basically his force field is very weak and easily penetrated by all manner of bacteria, viruses and fungi. All of the protection provided by his immunizations have been wiped out. He will have to get all new shots at the one year mark. In the meanwhile, he can get chicken pox and measles just to name a few. With cold and flu season about to start, this is all the more reason that Nick needs to maintain a low profile and minimize his exposure risk.
2) Nick has to stay out of the sun as any exposure to the sun may trigger graft vs. host disease of his skin, which can be a very bad thing.
3) At the 60 day mark is when signs of chronic graft vs. host disease can begin to appear. GVHD as it is called can range from mild to severe. It is basically what happens when the donor cells start to attack the hosts body thinking it is foreign (because to the donor's cells, Nick is foreign!)
I pray to God that Nick does not get this as it can be very serious and can attack many different systems/organs of his body like the skin, the GI tract, the liver, the heart and more. The treatment for GVHD is also not pleasant and involves lots of steroids and sometimes anti-rejection drugs, which come with their own set of side effects and complications. Always with the side effects and complications. GVHD is one of my BIGGEST fears right now.
4) The leaving of the IPOP has a downside to me in that Nick will no longer be getting the close follow-up that he was getting in the IPOP (which on some days was also debatable even in IPOP) When you get busted down to the "clinic" you are considered to be outpatient. Nick will no longer be followed by the BMT attending or anyone in IPOP for that matter. He will then revert back to Dr. Fazi and Dr. Caramel, who are medical oncology doctors. We like both of these doctors, but, Nick won't be seeing them as often, which is a good thing as long as Nick is doing well.
5) Once the line is out, Nick will have to get stuck for all of his lab draws and treatments when needed. Hopefully, only once a week and then once every two weeks for a while then ??
6) Nick's liver enzymes were still slightly elevated, so I am hoping these numbers come down this week.
7) Nick had to start back on his Gleevac, which is the "targeted-therapy" medicine for the CML that keeps the Philadelphia chromosome from rearing its ugly troll head. Unfortunately, the Gleevac is strong stuff that causes hair loss and counts to drop and may also trigger GVHD! The doctors were just back from some conference and the new thing is to start patients back on the Gleevac as soon as their counts return, so they wanted Nick on it right away. Now we have to wait and see how this will fit into the picture. Another question, why the urgency to get him back on it? What is the new data?
8) There were rumblings about other tests that shall remain nameless right now as Nick does not want to ever have this test again. Therefore, not even going to discuss it now.

And I haven't even begun to address the emotional and psychological issues that go along with all this. I found a very interesting article about just this subject as it pertained to BMT patients and their caregivers right in the magazine pile at the IPOP the other day! I will save that for another post as this one is way too long already!

I guess I just want everyone to understand that there is a long, long, long, way to go and many obstacles yet to be moved before this is over. (Ganesha do you read me?) Nick really needs to have the continued support of all his friends and family. Of course, this gets back into the emotional stuff once again, but, now is when this really comes into play. The social isolation and the restrictions due to concerns regarding infection are really tough on Nick (or at least that is my opinion). Now more than ever Nick needs his friends to stay in touch so he doesn't feel like he is out of the loop with all of his peers and friends anymore than necessary.

How difficult it must be to feel like everyone you know is moving on with their life. They are busy working and doing what normal twenty-somethings do, while Nick is stuck dealing with quite a severe illness. So please keep emailing, face booking, writing, calling and VISITING! It is OK for adults to visit as long as you are not sick and/or you haven't been recently exposed to someone who has been sick. Flu shots are strongly urged for anyone who will be around Nick on a regular basis...we all have to get ours! Sorry that this post has been so long and drawn out and completely lacking in creativity. I am just too tired to be creative right now.

A good laugh and a long sleep are the best cures in the doctor's book. ~Irish Proverb

How do people go to sleep? I'm afraid I've lost the knack. I might try busting myself smartly over the temple with the night-light. I might repeat to myself, slowly and soothingly, a list of quotations beautiful from minds profound; if I can remember any of the damn things. ~Dorothy Parker

A Bad Dream

Well yes...that is a picture of Captain Nick! Looking at this picture makes me smile and makes me sad. Nick doesn't quite look like this picture anymore. He is still my same sweet boy, but, now he is skinny and frail and bald and sad and I cannot fix it! As a parent, I cannot begin to tell you how frustrating and horrifying it is to know that you cannot save your own child from danger. You have to depend on people in white coats who breeze through cancer centers as if they are in a shopping mall. They care on some level, but, not the way we do. They don't love Nick like we do.

I have not written much of late as I have been overwhelmed with so much of what has been going on. I feel that I am in an emotional limbo right now. I waffle between feeling nothing and feeling too much. While Nick is doing OK, I have been unable to feel in a celebratory mood. I feel like I am trying too hard to put a good face on things at the moment and I am tired of it. I feel like I have fallen into the rabbit hole and I never liked Alice or her shitty wonderland! (Note: A far worse expletive has been deleted for those with sensitive sensibilities - although I have no idea how long I will remain in this frame of mind so beware of four letter words and other harsh realities to come and that would include the music as well - consider this your first and final warning on the subject.) Nick keeps telling me I need to go to "anger management" classes? I don't get angry with Nick...I do get angry about other stuff . I do have anger about this subject and therefore have displaced said anger onto unsuspecting inanimate objects, stupid drivers on Orleans Street and whatever or whomever may cross my path.

Yes... I have anger and I don't have anywhere to put it! If there is a shrink out there who has an appropriate receptacle, please feel free to UPS it to my house ASAP before I explode with the rage of a thousand suns! I really can't begin to put what I am truly feeling in this blog right now for fear of offending someone. I am doing my best to hold it together, but, all I want to do is take care of Nick and NOTHING else. I feel like I am clinging to my sanity by the smallest of threads. Is this normal? I don't know. Why am I feeling this now? I don't know. Why does Nick have to go through all this? I don't know. So many questions with no answers. Is the worst over??? I don't know. Does anyone?? The answer to that question is NO!

And all I can think is that if this is what I am feeling, what is Nick going through? I want to help him, but, it seems in this he does not want my help. Maybe with time, the answers will become clear. Right now, the picture is blurry and my eyes will not adjust.

When did everything get so hard? I long for my old life. I know Nick must feel that way too. If only this were a bad dream and we could all wake up and find that someone was playing a cruel joke. Knowing what we know now, we would forgive them.

Light The Night Walk

Well today has been a great day! Zeke arrived to take Nick to the IPOP. Glenn was off fishing with Uncle Steve and I was at the studio. It wasn't long before I got an excited call from Nick. Are you ready? Nick's neutrophil count was 2070!!! Hallelujah and saints be praised. He called from Kate's to tell me the good news and to say he was happy would be an understatement.

While everyone is doing the happy, happy, joy, joy dance, I want to let all my faithful readers know that Nick & I will be participating in the "Light The Night" walk to be held at Ironbirds Stadium in Aberdeen on Saturday, October 25th. This will be our first walk of many!

The donations from the walk are used to support the work of the Leukemia and Lymphoma Society. Nick and I have found this organization to be very helpful in providing information and support. If anyone would like to donate to support this wonderful organization, I have provided a link to my sponsor page. I know so many of you have already donated to Nick's fundraiser, so please do not feel that you need to give again. If you wish to donate, please remember that NO DONATION IS TOO GREAT OR SMALL...every dollar helps!

The link is www.active.com/donate/ltnBaltim/2426_dancindianern I am not sure how much of the walk Nick will be able to do, but, he is really looking forward to it. When you go to the walk, the participants all carry balloons...red balloons are carried by supporters (friends, family members, caregivers, coworkers), white balloons are carried by cancer survivors, and gold balloons are carried in memory of loved ones who did not survive this disease.

Here are some facts that I found quite daunting, even as my son has become one of these statistics:

• More than 823,000 Americans are living with blood cancer.
• Leukemia is the leading cause of cancer related death among children and young adults under the age of 20.
• Every five minutes someone is diagnosed with blood cancer.
• Every ten minutes someone loses the fight.

If anyone would like to walk on Nick's team, please feel free to contact us ASAP! Any and all our welcome. In future years we will be more organized. For now we are newbies to this whole experience, but, I know we will be walking with renewed energy in our step and joy in our hearts for the gift of life that Nick has been given. Even though Nick is still fighting his battle, we can do our part to see that no one has to take a step on this journey against blood cancer ever again!

Holding On

Have the leaves started to change color already? It cannot be October already...the month of falling back and trick or treat. Has it really been almost five months since Nick was first diagnosed and almost two months since his BMT? Tomorrow will be Day #43 post transplant!

Nick has been showing slow but steady improvement in his appetite, his energy level and even his color. He has been eating better and feeling stronger each day. Nick's counts have also been showing improvement with each passing day. His last visit to the IPOP was on Thursday and his neutrophil count was up to 693! The fever has been kept at bay with continued IV antibiotics around the clock and the anti-fungal by mouth. The Vancomycin was stopped a few days ago and Nick's body seemed not to mind. If he continues to do well, they will take other medications off one at a time and see how he does. I pray that these are all signs that he has really started to turn the corner, but, I am still holding my breath for a while longer.

Nick was given a brief reprieve this week and we were actually "off" from IPOP this past Wednesday and Friday! It was a nice break from the daily routine of driving back and forth to IPOP and we both got to sleep in on Friday morning! The Thursday appointment was very long, due to lots of patients and not enough nurses. Nick was really only there to get blood drawn, but, we still had to wait around for almost three and a half hours before we could finally head for the hills.

The weekend brings a new set of "Mom worries" as Nick is off to the IPOP with friend Zeke and then to Kate's house for the weekend. It is so hard for me to let go of my patient. I only want him to be safe. Nick & I debate the pros & cons of this decision, but, ultimately I am over ruled. I want him to be free, but, I also want him to be safe. I will never be able to make him understand this and so I must accept and pray that all will be well while he is back out in the world. I trust Kate to take good care of him for she knows all that he has been through.

“Our strength grows out of our weaknesses” ~Ralph Waldo Emerson

“Some people think it's holding on that makes one strong- sometimes it's letting go.”

A+

Time to do the happy dance again! We got some very good news today. The results of one of Nick's tests came back today. The alphabet soup name for the test is "rflp," which stands for Restriction Fragment Length Polymorphism! I have no idea what all that means. Bottom line: the test tells how much of Nick's blood is genetically the donor (testing DNA) which is also known as chimerism.

I am so happy to report that Nick's result is 100% DONOR!!!!!!!

This is a huge step in the right direction and such a positive finding for Nick! The nurse practitioner told us that this is as good as it gets in terms of "engraftment" of the donor marrow in Nick's body. She said if this was a graded test, he would get an A+. Now it is official...Nick has two DNA's (so very weird to me). His blood/marrow is genetically all donor (the "new and improved" without leukmeia Nick) and the rest of him is genetically the same Nick we all love!

Because Nick's counts have been low, the doctors have been somewhat worried about his graft and they have been waiting for the results of this test to see what further testing, if any, needed to be done. If Nick had been 70/30 or less, sometimes zero donor, that would have been very bad news and possibly indicate signs of graft failure. (This has been hanging over my head for a week or so now and thus why I have been really sad and worried.) NOW I AM GREATLY RELIEVED AT THIS WONDERFUL NEWS! This means that Nick is 100% engrafted and therefore, he does not have graft failure.

Nick's counts are still low and his ANC in particular is still being very stubborn about showing signs of coming back up. Today his platlets, blood count, and white cells have all shown a little bump so that is a good sign that things are going in the right direction. These counts in combination with the rflp show that Nick is doing OK. The new attending Dr. Swisher (OPSEC) was even considering doing a bone marrow biopsy today to check the "chimerism," in the actual marrow; but, Nick did not have to have it done today because of the rflp result!

Nick must continue on all of his antibiotics and anti-fungal medicines until his ANC starts to trend consistently upward and gets over a minimum of 500. Until then, he is still at high risk for infection. I am hoping he will show signs of count recovery throughout the week.

Nick has been in good spirits and feels so much better since somehow we have managed to get a handle on the N&V. He is eating something now and has a little more pep. Nick still has a long way to go, but, today is a great day! The troll is pouting under the bridge and another obstacle has been successfully overcome (thank you God & Ganesha).

I also want to say thank you to EVERYONE who has been supporting Nick (and Glenn, Sara and I) through this process. Your prayers, good thoughts, cards, letters and phone calls let him know that he is not forgotten and that he is well loved by so many. The fundraiser was a rousing success and Nick has been a little overwhelmed by the generosity and kindness of family, friends and strangers alike who have come to help in his hour of need. THANK YOU SO MUCH from the bottom of my heart, which today is dancing for joy!

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” Leo F. Buscaglia

Dance Therapy

The sound comes to me as I round the corner to the elevator. The music is beautiful and yet, so incongruous in this place of somber and hushed tones. There is a grand piano in the lobby of the Weinberg Center. Every now and then someone will be playing. I always wonder if it is a former patient or family member who has returned in hopes of bringing some peace, some solace, some joy to all those who enter here.

The music is soothing and comforting to me. It draws me like a moth to a flame. I wish I could just begin dancing in the lobby the way the musician is able to sit down to the piano and begin playing. There is an open space that cries out for movement. Would anyone notice? Would they think I was crazy or lonely or forlorn?

Many say that dancing is a mirror to the soul. I am afraid.

What will happen when they see all the pain and sorrow come spilling out onto the ground?


“If you are going to walk on thin ice, you might as well dance”


“Those who hear not the music think the dancers mad”

The Mickster

Hey everyone out there in the blogosphere. Sorry I haven't posted in a few, but, I have been tired and sad and busy running up and down the roads with Nick.

My big 'ol Top Cat, "Mickey" passed away the other day. Sara & I miss him so much already. He was named after Mickey Mantle and he has been with us for fourteen years. He had been ill and I had just taken him to the vet to find out he had some serious heart problems. I knew he wasn't doing well and it was just a matter of time, but, he died alone here at the house, while I was off at the hospital. That made me very sad. I guess it was just a trigger for me to let out all the sadness and frustration I have been feeling in other areas of my life. It is funny how attached one can become to one's animals. Nick told me that Mickey is in a better place now, "kitty heaven." I'm not so sure. I already have people offering me kittens, but, I can't have any new animals in the house until Nick is well.

Nick has been having a really rough time of it these past few weeks. Since he has been home, Nick has been feeling really down in the dumps both physically and mentally. This latest setback with the fever and hospital admit has hit us all hard and while he is still doing well, there is for me a bit of uneasiness that makes me wonder...are we still headed in the right direction? Or, have we veered off the path and we will soon be encountering that ugly troll guy! Nick has not been able to eat in days. His weight is down to 154 pounds. Nausea and stomach "pain" have been plaguing his days of late. None of the doctors or nurse's have anything to offer on this and the anti-nausea meds don't really seem to be helping. In the meanwhile, he must continue on his antiobiotics and the anti-fungal (AmBisome), which are extremely hard on his system. He tells he doesn't feel well several times a day and I just don't know what I can do to help him get over and through this time.

After his discharge on Saturday, we returned to IPOP bright and early on Sunday morning to discover that Nick's ANC count had dropped in one night from 600+ to 60! No one has been able to give us any kind of a good explanation for this drop in his counts. His other numbers are stable, but, his liver enzymes are also elevated. The nurse practitioner that is filling in for our regular NP was concerned that another infection was causing Nick to "chew up" his neutrophils. She sent Nick for another sinus CT which was unchanged (although there is an area of concern that no one mentioned to us because "they" think it is nothing). They drew CMV titres to see if that is what is causing the problem, although he has been negative for CMV all along. The only good thing is that Nick has been without fever for several days now. We continue the antibiotics around the clock at home.

I want Nick to be well and be happy. It is so hard to see him go through this right now. I have to keep reminding myself that it is only Day #34 post BMT and that is still so early in the process. I just want him to be able to EAT so he can start getting his weight back up and get some energy. I truly feel that this is a big problem right now as he is unable to keep much down and his stomach is queasy all the time. Today his entire food intake consisted of about 9 tater tots....literally. He is trying to drink to stay hydrated (his creatinine was also elevated today, could be from the meds or lack of proper hydration) but, even getting fluids in him is tough. He is so tired all the time, he sleeps 12-16 hours/day; which doesn't leave many hours for eating!

I am finding the situation at IPOP to be very frustrating because there is no consistency of care there. We seem to have a different nurse every day and never see a doctor. There doesn't seem to be a rhyme or reason to what they do...while Nick doesn't like being inpatient, I feel the care is better and more encompassing. Anyway, I have to go pack up for tomorrow. I will try to post a more coherent story tomorrow.

What Is A Cat?

Gentle eyes
that see so much,
paws that have
the quiet touch.

Purrs to signal
"all is well"
and show more love
than words can tell.

Graceful movements
touched with pride,
a calming presence
by our side.

A friendship
that will last and grow -
small wonder
why we love them so.

Author Unknown

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