Choosing Happiness

One year and three days ago on May 28th, 2008, Nick's life and the lives of those who love him were forever changed. I will never forget the shock and disbelief we were all feeling. It seems like just yesterday that Nick and I made that first fateful trip to John's Hopkins and now it seems like there is no end in sight. Nick has been through so much and yet he remains steadfast in his mission to stay "in the fight" against what has proven itself to be a formidable enemy.

While I often use this blog to complain and whine and express all manner of frustration, I would be remiss if I didn't give thanks for all the blessings in my life. I am not a very "up with people" kind of person. I tend to see the glass half empty...it is just the way I am. In my own life, the mix of nature and nurture has created who I am and try as I might I can't seem to undo the way I view a world that can often be so full of pain and suffering. On the other hand, there are often equal amounts of goodness, love and caring to balance all the bad stuff. I guess it just seems that the bad stuff has been up in my face for so long, I can't help but be overwhelmed with it all. Where are the damn rose colored glasses when I need them?

So here is an excerpt from a wonderful book called "Growing Wings" by Kristen Jongen. It is Sara's book and she lets me borrow it when I need inspiration. The title of this excerpt is called "Shoe drop." This is so what I CANNOT seem to do....I am always waiting for the other shoe to drop and this only seems to make one irritable, jumpy and unable to live in the moment. That is why I love this little story...I want to "learn to trust happiness." So anyway, here goes.

shoe drop by Kristen Jongen

"It occurred to me this reprieve of sadness is a choice. It's a choice to mentally let go of the obsession to worry even in the midst of the storm-and let the ship sail where it may. I am always afraid of retreating into denial if I don't face something down. Yet there is a happy medium, I suppose. A place where I choose to be optimistic. A place where I unabashedly allow myself freedom and happiness without feeling it's an invitation for the other shoe to drop. I want to learn to trust happiness. To let myself feel good. The shoe can drop whether or not I am happy, sad, pensive, obsessive, staring at it or enjoying myself. Watching it drop is, in the end, no less painful than hearing it drop and turning to look. Or hearing later that it has dropped. The fallout is the same. At least it has been, to this point. Why not choose happiness?"

Dr. Lee Nadler: A Force of Nature

Cute Puppy

So I needed to post a picture that would make me smile. Oh my gosh...so adorable. Nothing like a furry little ball of love to bring some happiness to a place otherwise bereft of joy.

It has been very rough around these here parts lately. Since Nick has been out of the hospital, we have been busy going back and forth for his appointments 2-3x/week. They are basically all day affairs that are physically and emotionally draining for me and for Nick in one way or another.

Just the other day as Nick & I sat in the crowded "PICC's & PORTS" waiting room, we saw a really cute little girl who was there with a family member. She was skipping and twirling about the place, oblivious to the pain and suffering in the room. I said to Nick, "I really miss my little kids." They have so much joy and happiness in them. I remarked that the 2nd floor clinic could sorely use some joy in rather large doses! They need a clown, or some dancers, or a parade to come marching through there one day. At first there would be shock and then there would be smiles, and chuckles and actual moments where all could forget what a freaking hell their lives have become...or is this just me projecting my own feelings onto others? They need one of those Pet Friends to come so everyone could "ooh" and "ah" over the furry creature and how cute and well behaved he or she happens to be! I am telling you there are just days I want to stand up on a chair and start screaming like an insane woman...HELLO! Is anybody out there? Is this hell's waiting room? Where was the wrong turn we took that lead us to this place full of people who are so busy they don't even see us? Why can't we find our way back?

Nick has been having a lot of trouble with his breathing. The steroid taper was not going well, so Dr. Pants put Nick's dose back up where it was, so now he is back on really high steroids again. What does all this mean? I have no freaking clue right now. And apparently the doctors don't really have one either. I have been trying to look up options for Nick to see other doctors and there is a study at NIH on GVHD we might look into. No miracle cures though. Most days I am tired and sad...I cannot shake these feelings that are pulling down. I cannot figure this one out anymore. I do not understand. I am tired of being patient and I am tired of the whole messed up medical system. I could write a book filled with prescriptions for frustration.

Today we met another young woman who also has lung GVH!! She also must wear oxygen 24/7...she is fighting, staying strong, just like Nick. Her Mom runs for food, wheels her chair, waits patiently...knitting sweaters. I don't want to knit sweaters, I want to bang on the walls and break glass and kick people in the shins and say "Wake the fuck up...fix this! Fix what you have done with your drugs, and your cures, and your theories, and your maybe this might work, and your we don't really knows! It is endless and ruthless in it's onslaught. For Nick I will stay strong and keep on. That is all I know how to do right now. I have no patience for people who won't work as hard as I do to help my son. God damn slackers! So that is all the anger I can spew for now...for those who can't handle it, just keep looking at the cute puppy.

Always Remember

"Mansions of The Lord"

To fallen soldiers let us sing
Where no rockets fly nor bullet wing,
Our broken brothers let us bring
To the Mansions of the Lord.

No more weeping
No more fight
No friends bleeding through the night
Just divine embrace
Eternal light,
In the Mansions of the Lord.

Where no mothers cry
And no children weep
We shall stand and guard
Though the angels sleep,
Oh through the ages let us keep
The Mansions of the Lord.

Flags In

Soldiers of the 3rd Infantry "Old Guard" worked with members of the Navy, Marines, Air Force and Coast Guard to dress more than a quarter-million graves Thursday to prepare for the Memorial Day holiday.

The 250,000 flags were placed in a little more than three hours.

"Flags In" has been a Memorial Day tradition at the Arlington National Cemetery since 1948. It is the only time of year flags are displayed on every grave.

Section 60

Remember

Even in our sleep, pain which cannot forget
falls drop by drop upon the heart
Until, in our own despair, against our will,
comes wisdom through the awful grace of God.

~Aeschyulus

Bravely Singing

In Flanders Field the poppies grow,
Between the crosses row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly Scarce heard among the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders field.

Written by Lieutenant John McCrae, MD (1872-1918) Canadian Army

Of Light And Sun

“Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. Love still stands when all else has fallen.”

Tomorrow Nick and I will travel back to Hopkins to have labs done, see Dr. Pants and Dr. Frosty, and get the general once over. Nick has been holding his own here at home. The crepitus in the chest remains, but, Nick has no signs of any deterioration in his lung status. We are slowly figuring out a schedule for home and we have not yet ventured out beyond our trips to the hospital. We will return on Thursday and Friday of this week for photopheresis treatments. It will take time for Nick to regain his strength and this in turn will take improvement in his weight and nutrition status. Today Nick's appetite was down and he seemed a little more tired than usual. Today Nick sat outside and watched the sunset. It was nice to know he was enjoying this moment, the cool air, the calm sky, the time to reflect and renew the spirit; to find solace and strength in the miracle of another day.

The picture is of the Apollo temple at sunset in Turkey. This prompted me to read about the Greek god, Apollo. Apollo has been variously recognized as a god of light and the sun; truth and prophecy; archery; medicine and healing; music, poetry, and the arts. We could use a god of medicine and healing right now, but, for the moment I will settle for light, sun, truth, music and poetry!

“Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing. Use the pain as fuel, as a reminder of your strength.” August Wilson

A Walk In The Park

Has it only been two days since I last wrote something? It seems like an eternity. My life is anything but stable or reliable right now...it seems I never know from one moment to the next where I will be or what I will be doing. It is somewhat unsettling at times, although, I have gotten used to it? Today, Nick and I had to go down to the clinic so Nick could get a CXR. Since Nick came home the air in his chest has continued to re-accumulate. Last night he had big bubbles of air under his skin and all over his chest and neck. Nick decided he should go on 100% NRB here at the house, so yesterday, I called the on-call doctor to make sure that was OK. She said as long as Nick was "stable" we could do that and come in this morning to get checked out. The CXR showed that Nick definitely has more air (fancy name = subcutaneous emphysema), but, he had no signs of any collapsed lung and since he was "stable" that he could go home. The CXR is not the best test to see what is going on, but, the CT scanner doesn't go on weekends, unless you are admitted! CRAZY....this place is driving me CRAZY!!

The bigger question is why does Nick keep getting these pockets of air. The answer seems to be because his lungs are just extremely fragile right now. The doctors are calling it "air-leak syndrome" and this is something that can happen to a rare group of BMT patients who get lung GVH and then get this syndrome. We don't know if it is fixable or reversible at this point. This "condition" along with the debilitated state of Nick's lungs is a source of anger and sadness for all of us. Nick will continue with his current therapies in hopes of a miracle cure of some sort. Right now those treatments include the photopheresis, the steroids, and the immunosuppressant medication. In addition, Nick is supposed to have "aggressive pulmonary rehab" but I don't know what that means or how it is supposed to help.

In the meanwhile, Nick has been doing well otherwise for the short period of time he has been home off and on over the last few days. I can't quite grasp the whole idea yet as we have not yet settled into any kind of a routine. Nick is eating like a champ due to the steroids and appetite stimulant. However, he has not gained an ounce of weight. I swear he has a hollow leg where he is putting all this food. Nick continues to have to check his sugar and give himself insulin shots.
He is doing great with this and with all of his medications, which are quite numerous. Nick says,


Nick has a borrowed XBox so he has been playing a lot of video games...Grand Theft Auto and Halo apparently are quite addictive, since he seems to be playing them a lot! Nick has been trying to figure out how he can start doing some fun stuff. It is going to be a challenge with the oxygen and his current physical limitations...but, we are all determined to make things happen for Nick in whatever ways possible. It may take baby steps and a lot of trial and error but, I know we can figure out ways to get Nick out and about as much as possible. There is always the infection concern, but, we have to find a balance between Nick's medical needs and his opportunity to have some kind of life outside of being a patient all the time. It is very difficult right now as we are all trying to figure out what Nick's baseline will be. Is this where the world stops and we all get off? A year ago at this time, I hoped that Nick would be well on his way to returning to a "normal" life. I hoped and prayed with all of my heart that he would be one of the lucky ones who beats the odds. It seems that those hopes, dreams, and visions for the future must be modified, adapted, changed and rearranged.

Right now I can't think too much about all that is happening, when I do I get pretty upset. I have not felt that I can really put all that I am feeling out there right now. I guess I will eventually, it is hard for me though, because I know that Nick, Kate, and lots of others read this blog and I don't know how much to say or not to say. My emotions are like a roller coaster and I have not yet figured out how to get off this ride.

I hope to channel my energies into the following areas: 1) continue to take care of Nick in the here and now...which is a full-time job, 2) work with Nick and his medical team to facilitate short term and long term plans for his current situation...I will not let these doctors just string us along on a month by month basis. I want a plan, I want second opinions, I want everything possible to be done to make sure Nick's quality of life doesn't deteriorate any further, and finally 3) I want to spend as much time as I can helping Nick do the things he wants to do to enjoy this life that we are all given and take so much for granted. I have a good list for starters like, snowballs, going to the park, going to the mall to get some new sunglasses, an Orioles game, figuring out how Nick can go camping and sit by a fire and roast marshmallows (with oxygen?), going to the beach to hang with the G-Ma, and so much more. So as you can see I have my work cut out for me...gotta get on the stick. The picture is of the Grand Teton National Park. It looks so beautiful there, doesn't it? Wyoming anyone??

“When you reach the heart of life you shall find beauty in all things, even in the eyes that are blind to beauty.” Kahlil Gibran

Warm Fuzzies

I am happy to report that Nick was able to bust out of the hospital late last night! It took some wrangling, but, the new attending final saw the light and decided to let Nick come home. We left the hospital around 9:30PM so we were all tired, but, so very happy that Nick is back home where he belongs.

If all goes well Nick will not have to return for lab work until next Tuesday. Then we will go back for photopheresis treatments on Thursday and Friday of next week. Hopefully, Nick's lungs will cooperate and we will be able to settle into some kind of "outpatient" rhythm, coordinating his lab work and all his appointments to minimize the number of trips we must take downtown. For tonight, I am just going to enjoy having Nick back home in his own bed and my family all under one roof. Goodnight all.

Ebb & Flow

Once again our ship has run aground. After three days at home, Nick was readmitted to the hospital on Saturday night. To make a long story short the air in Nick's chest, which is called a pneumomediastinum, came back and started causing some symptoms. Nick was breathing a little faster, needing a little more oxygen. and then he started having a lot of pain in his chest, neck and back. In addition, Nick discovered that he had little air bubbles under his skin. This is called "crepitus." When you feel your chest or neck with your fingers, you can feel little bubbles or crackling under the skin, like rice krispies. This crepitus should not be there and is not normal. On Saturday afternoon, when Nick discovered this, I called the doctor who told us Nick would have to come in and be admitted and he wanted Nick to get a chest CT scan. Nick, Kate, and I spent a LONG night at Weinberg waiting for the scan to be done. The moonlighting doctor was very NICE and he assured us he would do everything in his power to get Nick discharged early in the morning. Kate & I stayed with Nick until about 3AM! I felt so bad that Nick had to be in the hospital again and I know Kate did too. It was such an emotional let down for all of us, but, of course, it hit Nick really hard! The most frustrating part was the WAITING for the stupid test! If it was such an urgent situation why did Nick have to wait until 1AM in the morning to get to the CT scan? Then to add insult to injury, we found out that the moonlighting doctor is not allowed to discharge anyone! Nick was told he would have to be seen by the "team" in the morning, then maybe he could go home. OH MY GOD!! I am thinking to myself, uh...that would be the same team that sent him home with this problem in the first place??? ARGH!! We even considered signing out AMA or putting a bunch of pillows in Nick's bed to make it look like he was sleeping and SNEAK OUT the front door.

On Sunday morning, I called Nick and he said they were going to send him home. As I drove to the hospital that morning, I was so happy that I was going to get my boy and bring him home again. Then I got the call from Nick..."Mom, they won't let me come home!" My heart just sank and my Mother's Day balloon of happiness just popped! The attending doctor, Dr. Lugnut, did not feel that Nick was ready to be sent home, so he is now back on 5B hoping the doctors can figure out why this air thing keeps happening. Now that Nick has had a little time to process all this his spirits are better and he has bounced back with his usual positive energy and the easy going Nick is back. I am not sure how long Nick will have to stay in the hospital. I hope he will only have to be there for a few days. I will keep everyone posted. On a positive note, Nick is feeling pretty good despite all the air in all the wrong places and his uncooperative lungs. His appetite has been great, although he has not gained any weight yet! He's working on it though.
Nick remains without fever or obvious signs of infection. He is still the best son in the whole wide world! Being his Mom is a great thing to be! And I will close with a quote that Sara put in Nick's book of inspirational messages...I am not sure where she got the quote, but, here goes:

"Maybe being grateful means recognising what you have for what it is. Appreciating small victories. Admiring the struggle it takes to simply be human. At the end of the day the fact that we have the courage to still be standing is reason enough to celebrate!

Home Sweet Home

Nick is home at last! After a long day packing up Nick's room, three or four trips to the car, three or four trips to the pharmacy to straighten out all the meds, three pages of discharge instructions, and multiple discussions with various doctors, nurses, social work, dietitian, and equipment people, Nick and I finally got in the car TOGETHER for the first time since March 9th and headed for home. It is so wonderful to have Nick home and he is so happy to be out of the hospital. It is late as I post this and a new day has already begun. For now Nick is asleep in his own bed. Now I can breathe a sigh of relief before the next round begins. There's no place like home.

The ache for home lives in all of us, the safe place where we can go as we are and not be questioned. ~ Maya Angelou

A Little Birdie Told Me

If all goes according to plan, which I freely acknowledge never happens around these here parts much, Nick will be discharged from the hospital today! The last few days have been spent watching Nick's numbers, waiting for test results, and preparing for Nick to come home AT LAST!!

Nick has really come so FAR, it is so very amazing. Nick is not 100% recovered, but, the doctors feel he is strong enough to come home. I do agree that Nick is ready, but, it is very different this time around because Nick will be coming home on oxygen and this will be an adjustment for all of us. The oxygen "tanks" were delivered to the house last night and it all seems pretty simple. Working out all the ins and outs of traveling with the oxygen everywhere Nick goes, might be a little more tricky...at least it will take some time to figure it all out. Right now, Nick's lungs are still showing signs of what we assume is lung GVH. The GVH causes damage to Nick's lung tissue and therefore his breathing capacity is diminished. The oxygen is necessary for him to keep his levels up. Any activity stresses Nick's lungs and the rest of his body. Part of this is due to him being "deconditioned" or in lay terms being out of shape from losing so much weight and being in the hospital for so long. It will take time for him to get back a lot of his weight, muscle mass, strength, and stamina. This will need to be a balancing act between eating and activity. I hope that Nick will be seen by a nutritionist regularly and the physical therapy people while we are coming and going from outpatient. In addition, Nick will be seen by the pulmonary and GVH doctors. We are still waiting for the results of the liver biopsy. Since Nick's liver enzymes started coming down slightly on their own the doctors have not added any additional immunosuppresants. He continues on a large dose of steroids plus his Tacrolimus (ProGraf) which tries to keep the GVH in check.

Nick will have to get the photopheresis treatments twice a week. We will have to travel back and forth from the Hop now two to three times per week, for labs, photopheresis treatments, clinic and doctor visits. There are quite a few different doctors who will be following Nick for a little while. Dr. Pants and Dr. Frosty will continue to manage his CML and make decisions regarding his treatment on this front. The leukemia treatment per se is really up in the air right now. Nick was taken off the oral chemo drug (Dasatinib) and the doctors are not to keen on restarting it right now as they feel it may have had a part in suppressing his counts. The IT chemo treatment of his spinal fluid is also on hold right now. The doctors do not want to give Nick anymore of the drug Thiotepa, because they feel that this also may have really hit his marrow a little too hard.
As in, "umm, gee we didn't expect your counts to go that low." And, "whew" collective sigh of relief that Nick's counts FINALLY came back as opposed to finding out that basically knocked his "baby" marrow out of commission permanently! (Which, by the way, is a very bad thing!)

The hope is that the radiation treatments have cleared his spinal fluid of blasts for good!! (Of course now I am sort of glad that Nick did not get that Omaya resevoir in his head, because it seems like he won't be needing it now??) Nick will have to have another bone marrow biopsy in a few months, but, for now, we are chillin' on that front.

Nick's counts are finally up! Why?? Who could say, but, we will take it. I hope they continue upward, as this makes it a little less stressful in terms of worrying about every little germ and bug in the world. Nick still has to be super careful about where he goes and avoid crowds etc. especially with the swine flu issues. Nick absolutely cannot be around sick people and he has to be careful not to overdue it until he gets stronger. If Nick were to get any kind of respiratory infection, even a cold, his breathing and his lungs might deteriorate more quickly because he has no reserve to help him get through it. At least with an improved immune system, he has a better chance of fighting off whatever comes his way.

Due to the high dose steroids, Nick is having problems with his sugars being high. This is a common side effect from steroids, however, Nick must now do finger sticks on himself to check his glucose and take insulin injections if his sugar gets too high. (Sort of like diabetics have to do) This is a whole new added layer of monitoring and yet Nick is expected to learn all this and head on out to the clinic. Of course, now we can have a visiting nurse come to check on him at home because of the insulin shots. When he was feeling like crap on a cracker and WAY sicker than he is right now, no visiting nurse could come though!! AAAARRRRGGGGHHHH!

It has been a while since we have been doing the outpatient thing. I return to that situation with much fear and trepidation. I am very concerned that Nick will once again get lost in the shuffle of the hundreds of patients flowing in and out of the doors of this place. I know it will take some time to get back into the swing of this again, and I pray that Nick continues to improve each day.
There is a lot going on and there is still a long road ahead. Nick has come so far and the road has not been easy. I am not sure if it ever will be...only time will tell.

All I know is, we all need some rest and relaxation. Nick needs a break from all this medical stuff. I wish I had an answer to the big question...WHEN???? I told Nick today he has to continue to be patient and "work the program" but, he laughed at me and said, "I have been patient Mom. I have been patient for so long." How much longer Lord...how much longer?? I sometimes consider myself to be a patient person, but, this is pushing the limits of ridiculous.
Fighting leukemia is more than a long journey...it is an endless journey that we must somehow learn to enjoy along the way.

“Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. God is awake.” Victor Hugo

Hungry!

Once again, one of my pictures was creating consternation on my blog, so I had to remove it and now all is well. I have been at the hospital all day waiting for Nick to go for a liver biopsy. Nick was not able to eat anything all night and he did not get called for the test until 4:00PM! All those good eating hours wasted!!! Last night, I was sort of bummed out so I was not up to posting much, but, today I feel better so I will give everyone an update on the latest developments to Nick's never ending story!

First of all, the discharge discussions have been table for the moment. Several medical issues have come up that need to be addressed before Nick can head out the door.

The first is the air in his chest (aka - the pneumomediastinum). The chest CT scan from yesterday did show that the amount of air has gone down, but, the air is still there. Nick continues on the 100% NRB mask to try to force the air to absorb into the tissues (a long gas exchange story that I don't want to explain, nor do I fully understand). The doctors are still looking for the cause of this air. A test was done to check for what is called a tracheo-esophageal fistula. The test was negative, but, I later found out that this test is only able to detect holes greater than or equal to 1cm. That is an awfully big hole! I really don't think Nick has this TEF thingy as he has no other symptoms. However, considering the radiation he received I can imagine that he would be a risk for such a hole.

The second major issue is the continued elevation of Nick's liver enzymes. Despite stopping most of the drugs that could hurt his liver and stopping the IV food, Nick's liver apparently is not happy and wants to crash the GVH party. The doctors are not sure if Nick has GVH of the liver, but, the levels are concerning everyone. Nick is on his immunosuppressant medication called, Prograf, and mega doses of steroids and yet, these levels remain high. At this point, any GVH that Nick has is considered to be chronic GVH based on the number of days post-transplant.
The doctors ordered a LIVER BIOPSY to confirm that it is GVH. If it is GVH, additional medications may have to be added to get the liver enzymes to come down. They do not want to put Nick on these extra meds unless it is confirmed that he has liver GVH. These immunosuppressant meds have so many other side effects, they only want to use them if necessary. If it is NOT GVH, then the doctors will have to figure out what is the cause of this problem.

Nick was wheeled by stretcher to the interventional radiology department. There he had to have his neck numbed up and he also got some sleepy meds in his IV. They then take a big needle and put it in Nick's jugular vein, I will spare you further detail, but, they must thread this catheter down through Nick's vein to get to his liver. Then they put some kind of "grabber" thing down there to pinch off the biopsies of the liver tissues. The biggest risk is bleeding, followed by infection. Nick had to get platelets this morning to bump up his platelet counts for the procedure. He sailed through the procedure (thank goodness, I was worried....surprise!) and now has a new "hole" to add to his collection. I am not sure when we will have the results, but, I am sure it won't be tonight as all the doctors are gone now.

Since Nick's return to his room, he is awake and ready to eat! He ordered himself some dinner and ate heartily! If things go well, we are still hoping that Nick may be able to come home next week sometime. I have been slowly taking things from his room to minimize the load on the actual discharge day. Please keep Nick in your prayers. He is getting stronger. His appetite is improving. His body is fighting the consequences of this cure and most importantly his spirit remains indomitable and unbroken! "Man never made any material as resilient as the human spirit." ~Bern Williams

All But Lost

Tree at My Window by: Robert Frost Tree at my window, window tree, My sash is lowered when the night comes on; But let there never be a curtain drawn, Between you and me. Vague dream-head lifted out of the ground, And thing next most diffuse to cloud, Not all your light tongues talking aloud Could be profound.

But tree, I have seen you taken and tossed, And if you have seen me when I slept, You have seen me when I was taken and swept, All but lost. That day she put our heads together, Fate had her imagination about her, Your head so much concerned with outer, Mine with inner, weather.