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