Huff & Puff

So before I tell "the rest of the story" I wanted to explain the picture. Even in the midst of so much bad news, we all try to continue to find moments of joy and happiness. At one point, Nick was just sitting quietly in his bed (even as his poor lungs were working overtime to breathe) and Kate asked him how he was and Nick's response was, "I'm happy."
That is our Nick, he just keeps taking it all in and still is able to find moments of peace. And that moment was happy...Nick, Kate, and I were all there in his room just hanging out. It was such a relief to know that Nick was not going to have the lung biopsy and we were all going to enjoy the day. Nick & Sara & I have all been wanting to get another cat (since we lost Mickey) and so I told Nick I thought we should ask the doctor when we could bring a kitten home. Kate asked Nick what he would name his cat and he said Huffenpuff. So I said in that case we should get two kittens and name one Huff and name one Puff!! It was great fun to talk about something other than medical stuff. Kate and Nick watched Slumdog Millionaire and then Nick finally fell off to sleep.

Now for the tough stuff....based on the results of the pulmonary function tests, the doctors believe that Nick has lung graft vs. host disease. This can also be called bronchiole obliterans.
The small bronchioles in the lungs start to become fibrotic and narrow, which makes it difficult for the air to get out of Nick's lungs. It also decreases the surface area where oxygen exchange can take place. This causes hypoxia (lack of oxygen in the body) which basically translates into all the symptoms that Nick has been having dry cough, increased respiratory rate, increased work of breathing with exercise, and an oxygen requirement. I feel that this has been going on since November when Nick started with a dry cough that lasted for eight weeks! It makes me so angry and sad to think that I couldn't make people pay attention enough to actually do that one thing that might have led to an earlier diagnosis. Nick's current lung function studies show that his lung capacity has dropped by about 75% since his pre-BMT testing and his capacity to exchanged that gasses has dropped by about 80%! These are very bad numbers and there is no cure for this process. There are things the doctors want to try that might help and supposedly they do help in some people. But, as the doctor pointed out, this is a very difficult process to treat.

Nick will have to go back on the steroids at high doses for quite a long time. This will increase his infection risk and steroids have many other potential long term effects. In addition, he is possible going to have this thing called extra-corporeal photopharesis. This is where they will run Nick's blood through a machine (like a dialysis machine) to pull out the donor T-lymphocytes. Thoses WBC's will then be exposed to UV light which will render them useless.
The hope is that this puts a halt to the GVHD process in Nick's lungs. This ECP is relatively benign, but, not without risk, including infection. In addition, taking out these cells decreases Nick's leukemia fighting power, so while we hope to fix one problem, it may create another. :(
If he gets this treatment, he has to have it three times per week. Each time last 4-5 hours.

As the doctor was explaining all this, Nick told the doctor he had a magic wand!! His godson, Andrew gave him the wand. It lights up and strobes in multi-color luminescence! So Nick took it out and waved it over his lungs and tapped it on his head. I hope that thing works! That's my boy, so gracious, so brave, so strong to carry this burden for so long with such grace.

Nick is still on oxygen and working hard to breathe at times. His counts remain low and I am not sure how long he can keep breathing at these high rates. The fear is that he will tire and still might end up on a breathing machine. This would not be good because it would be very difficult to mechanically ventilate Nick's lungs in their current state. It is better that he stay off the breathing tube, because his body can much more efficiently manage his breathing. Lately, I have begun to worry when I leave for the night. I wonder if this will be the night I get a call saying Nick is having trouble. I don't want it to be like this...I just want my boy to feel good for just one hour of just one day. I can't remember the last time he actually felt good. We all just want to get Nick home. Please keep the prayers and good wishes coming Nick's way. They are much needed and appreciated.

What Next?

Hey all! Sorry it has taken me so long to put up this post, but, it has been another crazy day. This morning I arrived earlier than usual to keep Nick company, before he had to go off for this test. The doctors came in to do rounds and informed us that Nick was NOT going to go for the test. The doctor told us she would come back and talk to us about the reasons behind this decision. So for a brief moment, we all breathed a collective sigh of relief! The joy from the elimination of this stressor was short lived when Dr. Huff returned to give us the explanation.

Basically, Dr. Huff explained that she had spent a lot of last night thinking about Nick and the risks to Nick of doing the open lung biopsy. This morning the doctors were able to see the results of Nick's pulmonary function tests. The results of Nick's PFT's were not good in that there has been a significant change in the study results pre-BMT and now.

OK, I just spent like an hour typing the rest of this post and it was not saving because I was not on line...therefore, everything I typed is gone. I cannot face typing it again right now, so I will have to try and post it later.

Cutting The Heart Asunder

I feel as if I have been hit by a tornado tonight. Dark clouds brew in the sky and the wind is kicking up. I feel battered and bruised and I once again find myself in an emotional limbo. I cannot feel anything. Is this a protective mechanism, denial, insanity? If I let myself feel all these emotions, I feel that my heart will shatter into a million pieces.

The last few days have been very busy with tests for Nick. Trying to figure out what is wrong with his lungs and his breathing. He has had CXR's, special CT scans, pulmonary functions tests, and V-Q scans. Nick continues to require varying amounts of oxygen, he still cannot tolerate any sort of routine activity, like standing up to move from bed to chair or going to the bathroom. He gets so short of breath and winded, he sounds like a freight train. He has expiratory grunting at times and his respiratory rate is so fast. It has been steadily climbing for the past few days and currently he is breathing in the 30's and sometimes higher. Normal breathing rate for adults is 12-14/minute.

Today the doctors came to let us know that they felt that Nick needed to have a procedure called an open lung biopsy. This requires that Nick go to the OR and have general anesthesia in order for them to get biopsies of areas of his lung that are in question right now. They are actually trying to discover what is exactly going on...the current theories are infection, GVHD of the lung, and another inflammatory lung process that can happen after someone has a pneumonia. Nick could potentially have all three of these things going on at the same time. None of these options are good, and the treatments are all different and opposite for each of these.

I am so scared right now...there are so many things that will impact Nick with this procedure. His counts being low and infection risk and its potential hindrance to his healing. Nick will have to have a chest tube to re expand his lung after they do the test, another source of infection and potential delayed healing. Nick's platelets are still low, so bleeding is a huge risk and they will have to give him platlet transfusions prior to going to the OR tomorrow. Nick's lung condition is tenuous and he has such little reserve that he could have trouble coming off the respirator after the surgery and he might have to stay on it for a "few days." He will have a lot of pain from the procedure, the CT, and possibly a breathing tube. I could go on and on, but, I can't take it anymore right now.

I am asking EVERYONE to please PRAY for Nick to come through this day and for everything to go OK...once we get a diagnosis then treatment plans will be discussed. If anyone reads this in the morning, please send Nick your best positive vibes for him to come through this with flying colors. I will try to post something here as soon as I know anything!

“The beauty of the world has two edges, one of laughter, one of anguish, cutting the heart asunder.”

“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” Lance Armstrong

Know What I Mean, Jelly Bean?

“You can tell a lot about a fellow's character by the way he eats jelly beans.” ~Ronald Reagan

Wish I could say this picture was a reflection of what I was feeling, but, I cannot. There has been a lot going on with Nick and I haven't had the time nor the inclination to post much of anything. So I guess I will post an update on what has been happening here at the Hop. My biggest concern is that as the days tick off the calender, Nick is still not getting well. The new attending Dr. Hallelujah is very concerned as well.
The two biggest worries continue to be Nick's lungs and breathing status and his low counts.

Breathing and other essential bodily functions:
Nick seemed to be doing better with regard to his breathing, but, the two nights ago after I left Nick started wearing his NC and his FM together, which ultimately bumps up the amount of oxygen you are getting. His sats went up with this extra oxygen, but, no one noticed he was wearing both things. When I came in the next day at 3PM (I had stayed home to go to the studio and Glenn & Sara were here with Nick) I noticed this and I asked Nick why he was wearing both. He stated, "Well, I have to in order to keep my sats up." I then had Nick take off the cannula and just use the mask to see what his sats really were...the mask had to be turned up to 70% to get his sats in the low to mid 90's!! Now ever since April 3rd, I have been noting in my notes that Nick has not been feeling well and his sats have been trending lower each day.

On Wednesday night when I left, I was worried because all day Nick had been hanging around 90%, with dips down to 89%, and that was basically just sitting in bed! I was concerned what would happen overnight. Well, after I found that Nick had this increased O2 requirement, we called the RN and the doctor to the room, where they determined it was real and then they all began wondering what was going on..."Why did his sats suddenly drop?" I told them they did not suddenly drop, that apparently this had been going on since about 10PM the night before and no one noticed that Nick was on 6L NC and 40% FM at the same time. A CXR was done that actually looked good and then the pulmonary MD was consulted. It was decided that Nick should have a blood gas drawn. Long story short, Nick had methemaglobinemia. His levels were
elevated. When these levels are elevated it makes it hard for the hemaglobin molecule to carry oxygen to the tissues! Just what Nick needs right?

The guilty culprit is most likely a medicine called Dapsone. Nick was taken off Bactrim and put on Dapsone, because the doctors were trying to take off anything that could cause low counts. Nick has been on the Bactrim since right after his BMT so I doubt that this was the case, but, we figured might as well try it. So the Dapsone can cause the elevated methgb. Now fortunately his level was only up to 8% when it was discovered. (Normal is like 1-1.5%) I was concerned about this, but, at least it seemed to be a good explanation of Nick's increasing oxygen demand (although giving more O2 actually doesn't help in the case of methgb) but, alas, the doctors are worried there is something else still going on. It has been so long, that Nick's lungs should be recovering better from the pneumonia by now.

Therefore, more tests are planned for the near future, including ECHO cardiogram to check his heart, pulmonary function tests to check his lung capacity and compare to pre-BMT values, and finally, repeating the bronchoscopy to reculture and biopsy to r/o anything else that might be goin on. Nick has been back on the high flow face mask at FIO2 between 50-60% with sats in the middle 90's. His activity tolerance seems once again to be severely limited. His resp rate is up with any kind of activity and he sometime has expiratory grunting even at rest. His HR goes from his current baseline of low 100's (very high for an adult HR already, normal should be 60-70 bpm) to 130's within seconds of him standing up. His color is very pale and grey and he continues w/ dusky nail beds, especially in his feet, which are very cool and don't have the normal pink color. Should I be worried about any of this?? Nah...

Other issues include:

a) elevated liver enzymes with alk phos now up to 1120!! They think it might be GVH flaring up and therefore, Nick will start back on his Prograf tonight.

b) eating and nutrition - Nick remains on the IV food (called TPN & Lipids). His weight is still hovering around 130 lbs! At least he has not lost more weight over the past week. Nick's appetite has been in and out. Most days he is not that hungry and when he is the food here has been horrible. We continue to bring things from home, which is a challenge for sure due to all the food rules Nick must follow because of his low counts. The MD's finally requested that he be put on the "VIP" menu that costs extra and is designed for the people who can afford to pay for better meals. The good thing...Nick doesn't have to pay for them at all!! The bad thing is Nick has continued to have bouts of nausea and vomiting, despite medicating for this. Also, the food is actually somewhat rich and fancy for someone to start off eating, when your stomach has had noting in it for quite some time. The bottom line is Nick is not eating anywhere enough food to get off the IV food right now. The IV food can also be hard on the liver. At least this new menu offers more variety and slightly better food. It also allows Nick to choose the times he wants his meals to arrive.

c) Neck pain/Headache/Nausea/Vomiting - henceforth to be know at the Freakin' Foursome of Pain and Perturbia!! For more than a week now this irascible gang of symptoms have been wreaking havoc with Nick's waking hours. Every time Nick gets up to sit in a chair and eat, his neck begins to hurt and/or get stiff (muscular??), which leads to a headache, which leads to nausea, which leads to vomiting!! Several days ago, Nick started getting anti-nausea meds ATC and he has Ativan for breakthrough N&V. The problem with the Ativan is it puts him to sleep straight away. Usually, the headache gets so bad that he does not feel like eating anything and he just wants to get back in bed. Sometimes if he has eaten, it all comes up. The cause for all this is debatable right now. Nick was having the stiff neck and HA prior to even coming in the hospital, to the point, that Nick asked Dr. Frosty for some kind of pain meds at home. Nick started on Tramadol at home which did help. Since being in the hospital everything has gotten worse and nothing seems to help the pain. Nick was started on a muscle relaxant (Baclofen) and a different pain med like ibuprofen called, Trilisate, that seems to help a little. Nick is making a gallant effort every meal of every day to try to eat. Who knew eating could be so much work???

d) throat and swallowing pain - the swallowing pain is still there, but, maybe slightly improved. Nick came off the Fentanyl pain pump a few days ago as it was not really helping and it was definitely making him sleepy!

e) counts/soldiers - Nick's Army of infection fighting infantry dudes is sorely lacking! His WBC remains in the 900-1200 range (normal = 4500-11,000) ANC = 150-350 (normal = 1500-7800) Platlet count - continues to drop down requiring transfusions to maintain level. The platlet count dropping is from the effect of the radiation on the bone marrow, the WBC and ANC is less clear and Nick's counts have been down for a while now. They have stubbornly refused to rise up and fight! The doctors have removed every possible reason they can think of as to what could be suppressing these counts, so far without success. And so we wait, and wait, and wait some more. Where are the reinforcements??

Just came up with another theory...I wonder if Nick's deteriorating resp status has anything to do with having DC'd the Caspofungin. Nick got his last daily dose on 4/7 and Nick started with the extra oxygen on the night of 4/8!! Hmmm.....I put it out there for the nurse. Wish I had thought to ask about it earlier when Dr. Hoff was here. Nick also finally coughed up some good sputum from his lungs and it had a dark grey/green/black thingy within the sputum that actually looked like fungus. I know...TMI and EEEEEWWWWWW!!!!! Sorry, but I live and breathe this stuff. So why shouldn't you!

Sleeping With The Lights On

Today was another rough day. It started off well as Nick was sitting up in the chair and he took two walks! The first was one lap and the second was two laps. He is still requiring a fair amount of oxygen all the time and even more when he exercises. This is a picture of Nick's "food" that he gets via the IV. The yellow one has all the carbs and protein, the white one has the fat. Nick actually ate a little bit of food today but, it all must have sat in his stomach because later in the evening it all came back up. Nick is still suffering with pretty bad neck pain, which leads to pretty bad headache, which leads to nausea, which leads to throwing up anything that is in his belly. No one has any specific diagnosis. So after this episode Nick got a bunch of new medications to try and help the pain, the nausea, the headache, and then he slept the rest of the evening. I cannot begin to say how hard it is to watch this going on day after day after day. Nick has quite a list of things that are being worked on in order to get him well. His lungs, the fungal infection, the medicines, the lack of energy, his weight loss, his inability to eat due to sore throat from radiation, his headaches and neck pain, the nausea and vomiting, his low counts, his platlets and red blood cells that keep dropping and needing to be replaced, his damaged salivary glands that have given Nick "dry mouth" which makes it impossible to chew and swallow food properly, causes dental and gum problems, and creates the grossest, thick, and disgusting snot luges (sp?) in the world that Nick has to try and get out of his throat. And I won't even get into the emotional toll this has to be taking on Nick, because it sure as hell is taking a toll on me. The lack of sleep and the endless hours are starting to wear me out. I am exhausted and always have so much to do before I sleep. Despite this huge laundry list of issues, there has actually been talk of trying to send Nick home on oxygen, on Ambisome, with his PICC line, and even possibly the IV food. While I can handle all this, I feel strongly that he is by no means healthy enough to come home and run back and forth to the outpatient clinic for care! And I haven't even addressed the plan for continued treatment of to keep the CML at bay, which the doctors don't know what they will be doing yet, due to his low counts. I am going to bed now...I think I am just overly tired and need some rest.
As Nick said to me tonight when I left..."I will be better tomorrow Mom."

Caution

This is the sign on the door of the radiation area where Nick got his treatments. It is still hard for me to grasp that Nick's body has been subjected to such torture. It has been five days since Nick's last dose of radiation. Nick continues to suffer many of the side effects of the "acute phase" of what I consider a barbaric medical treatment. Nick's throat has been in quite a lot of pain every time he swallows due to the sloughing of the lining of his esophagus and the back of his throat. It is very painful every time he swallows and therefore, he has really been unable to eat any real food for the last week. In addition, he has been having significant headaches, neck pain and stiffness, and nausea, often punctuated with some actual vomiting, just to top the whole thing off just right. Nick has been on a pain pump, called a PCA, which stands for "patient controlled analgesia, since last week. It has been a long week trying to find just the right amount to help the pain, but, not put Nick out like a light. Yesterday, the nurse from the pain team came up to evaluate Nick and hopefully, the latest adjustments will yield positive results for Nick.

Nick continues on the oxygen and his lungs while showing some improvement are still far from normal. Nick is still unable to do normal things like walk, shower, exercise (lightly), without getting "winded" and working somewhat hard to breathe. I have no idea how long it will take for him to return to his pre-illness baseline. But, right now, he is far from "normal" when it comes to his lungs. Nick's counts are slightly better, but, they remain low and therefore, his still does not have enough soldiers to really fight this infection and heal his lungs. He has shown great improvement from his precarious status of a week ago, but, he still has a long way to go on this front. Nick's other counts are also up and down like a yo-yo...he has had to receive three platlet transfusions and two red blood cell transfusions. I assume these drops are related to the effects of the radiation and I am not sure when they will stabilize. Nick has been very fortunate that he has not needed a lot of platlet or blood transfusions, so I hope he bounces back real soon from this insult to his marrow.

The best news of the day for me...a NEW attending is coming on today!!! This attending is highly regarded for her attention to detail and bedside manner! The nurses give her high praise, so I am looking forward to a fresh start with some fresh eyes. I think she shall be named Dr. Hallelujah! Time for me to hit the hay...tomorrow is another day. Please keep Nick in your thoughts and prayers. The battle continues.

A Touch of Spring

Nick wanted some flowers for his room. Since he is not allowed to have live flowers, I bought some fake flowers and made an arrangement for his room. This little sprig of daisies was left over and I found a spot for them on Nick's IV pole. The nurses are always surprised when they come to change Nick's IV bags or hang a new medicine. It is nice for Nick because whenever he looks up from his bed, he can see flowers instead of the crazy tangle of IV tubing.

“Spring has come when you can put your foot on three daisies." ~Proverb

“If I had my life to live over, I would start barefoot earlier in the spring and stay that way later in the fall. I would go to more dances. I would ride more merry-go-rounds. I would pick more daisies.” ~ Nadine Stair

Dark Unfathomable Caves

“Full many a gem of purest ray serene

The dark unfathomed caves of ocean bear

Full many a flower is born to blush unseen

And waste its sweetness on the desert air.”

~Thomas Gray

It has been twenty-six days since Nick was admitted to the hospital. This admission is now officially longer than when he went in for his BMT, which was twenty-five days! It is really hard for all of us to wrap our heads around that one....that admission was so early in this whole journey. We had no idea what was in store and of course, we had such high hopes that the transplant would stop the leukemia in its tracks. Nick continues to show such amazing courage to fight this battle every day, hour by hour, minute by minute. I could count on one hand the number of really good days Nick has had since this all began ten months ago!

Today was a quiet day. It is after all the weekend, therefore, doctors go home early to their lives, while Nick battles for his and we sit and wonder what will happen next. Nick is slowly trying to recover from the myriad of attacks by radiation photons and strange fungii. Nick's lungs are still not well. He remains on oxygen, although he has been able to wean down slightly. His breathing has improved slowly each day, although, the gains have not been as large the last couple of days. Nick's counts have been steadily improving since last Sunday, so the general trend has been in the right direction. Nick continues with very bad throat pain from the radiation. This has made it almost impossible for him to eat. This doesn't seem like it would be such a big deal, but, it actually is because it seems there is nothing much anyone can do to take the pain away. Nick is on a pain pump, but, it does not really help the pain in his throat enough to enable him to eat. Nick is now on IV nutrition, so hopefully, he won't lose any more weight while we wait for his throat to stop hurting. In addition, Nick has been having some pressure headaches, pain and tension in his neck muscles, and some nausea. I assume these are also side effects of the radiation and I pray to God they go away soon.

Nick has been tired that past couple days. He was so excited and energized on the day he finished his last radiation treatment and I think now he is feeling the let down. Plus I am sure he is feeling the effects of the radiation fatigue as well. I tried to talk to a doctor today, but, they were gone for the afternoon. Nick was able to have a short visit with some friends today...I hope tonight he can get some sleep, something that is basically impossible in the hospital. I wish I could bring him home so badly, but, he is not ready yet. My heart is breaking, but, I must carry on. Every day is important and as Nick said the other day, "Every day is a gift."

April Fool's

First of all, I want to say I'm sorry for not posting an update sooner. But, I will get everyone up to date right now. As I write this post, I am sitting at Nick's bedside and Nick is quietly RESTING. Thank goodness. So much has happened in the past few days...it has been quite a whirlwind. The picture is just one that I like of Nick and Kate, doing something that Nick loves...hanging out with Kate, camping, and just being out of doors. I have actually purchased my first digital camera, so I hope I will have some pictures to post once I figure out how to download the pictures to the laptop. I also have to get a memory card. I didn't realize the camera didn't come with one! Without the memory card, I can only take like ten pictures!

So...here goes! After a very ROUGH several days last week (Thursday through Saturday), we were all very worried about Nick and his status. Saturday night he had a bad coughing spell and got into some real breathing distress. Luckily the doctor that was on was very good and calm. She actually started some simple steps that really helped a lot. Dr. Good started Robutussin w/ Codeine to keep Nick's cough down! This has been like a miracle drug in terms of minimizing the number of coughing jags Nick has been having. The problem was everytime he would have one of these coughing fits, he wouldn't be able to catch his breath and he would go down hill fast in terms of his breathing discomfort. She also put him back on his ATC (around the clock) nebulizer treatments. Dr. Good also (at my request) decided he should have his pulse ox/oxygen saturations monitored continuously! For me, this was also a biggie because I didn't want him having one of these episodes in his little back room and no one would even know! I went home on Saturday night only because I knew his nurse was excellent, there were several other really good nurses on as well and Dr. Good was on and the nurses spoke very highly of her.

On Sunday, Nick seemed actually a little bit better. I wasn't sure if I was imagining the slight improvement, but, so far Nick has been showing steady progress in the right direction. It was decided that Nick should be closer to the nurse's station, so we were given a head's up that on Monday, Nick would be changing rooms. Well...that meant a lot of packing of stuff for me in preparation for moving all his stuff. In addition, Dr. LL came in and spent some time to sit down and talk with us about everything that is going on, it was a good conversation, but, very scary as to what could possible happen if Nick's counts didn't come up and his lung infection didn't start getting better. More on the big picture later!

On Monday, Nick had a very busy day...he was seen by every service under the sun. Infectious Disease, Dermatology, Pulmonary, Heme-Oncology, Dr. Frosty, and I am sure a few that I have forgotten. Nick went down to radiation for treatment #10! He actually did very well and it was relatively quick. Upon his return to his room, the nurse from the PICC team was there to put in what is called a PICC line (peripheral intravenous central catheter). This is like the Hickman line he used to have but, it is placed through a vein in the arm and the catheter is threaded up to the bigger vein in your neck. The nurse does it at the bedside with local numbing medicine. The nurse was so wonderful and she has ten years of experience placing these lines. All went well and now Nick has better access and he does not have to get stuck for blood anymore. Nick and I were hoping he wouldn't have to get this line, but, discretion is the better part of valor and the MD's and nurses were concerned that if Nick were to get worse, he would need a better line and they preferred not to have to place it in an emergency situation.

After Nick had his PICC line placed, he was moved uptown to Room 08. This is right on the corner of the nurse's station. So I am happier that he would be monitored more closely. The funny things is ever since all this stuff has been going down, Nick has been getting a little bit better each day!! Now, he still has a long way to go, but, better is better and I'll take it!

Meanwhile, back at the ranch, Nick's weight has dropped to 129 lbs. In addition, Nick has started having a lot of pain with swallowing and symptoms of dry mouth. The decision was made to start Nick on IV nutrition (called TPN and lipids). My frustration level with this issue is beyond anything I can express right now, but, at least he is now getting nutrients and hopefully, this will prevent Nick from losing even more weight. There are many concerns with IV nutrition but, for now I agree that Nick needs it and since we have no idea how long it will take for the effects of the radiation to his throat to stop, he may not be able to eat properly for a while. He is on a pain pump for his throat pain, but, it is really not working for that purpose at all. In addition, the dry mouth seems like a minor thing, but, it actually has a HUGE impact on everything you do with your mouth...like eat, breathe, chew food, dental hygiene etc. SALIVA is a very important thing that one takes for granted unless the production ceases! Hopefully, all these changes are temporary! The irony of all this is that Nick's appetite has returned and all he wants to do is eat! He is making a list of all the places he wants to go and the things he wants to eat when he gets there!

And speaking of radiation...we thought that today was Nick's last day of radiation. But, guess what, he has to get one more radiation treatment to his brain! APRIL FOOL'S! Cruel right? Yes, the cumulative crowd down in radiation "forgot" to inform Nick of this little detail. The spine is done....THANK GOD! This is the main area of concern for the counts and the throat issues, so now these things can officially start healing. Dr. Climber was called to speak with us and his explanation is as follows, "the brain can take more radiation without as many severe side effects, so this is what we do." So dog mad nos fo hctib, Nick can't ring the bell today! Did I tell everyone about the bell?? When a person finishes their treatments there is a HUGE bell out in the hallway that the patient goes and hits with a big mallot type thing. There is a poem there about ringing the bell symbolizing the end of your radiation treatments. The poem was written by a former cancer patient. I have pictures so I will post them. So tomorrow will be Nick's day to "ring the bell." Auntie Elaine sent Nick balloons today...so colorful and beautiful. (Sorry Elaine, I did not know for sure about this other tx. until I got here this morning. Reminds me of when Nick was born and I told Elaine we were naming him Matthew. Then after Elaine sent flowers saying Congrats....little Matthew is here! I let her know I had changed his name to Nickolas!! Why break with tradition?) Anyway, Nick was happy to get the balloons to celebrate his last spinal radiation treatment. In his words, "my Auntie Elaine loves me." And he even got to smile!

Counts are still an issue, but, they have started to slowly come up!!! Nick and I have been so excited that some new soldiers have come to the rescue!! I don't know if this has been part of the reason that Nick is showing some signs of improvement, but, I'll take it. He has had a bit of an upward trend for the past three days! The increased counts and the improvement in Nick's clinical picture have warded of the potential treatment options proposed by the team. These are treatments that we hope to avoid, one being a medicine that stimulates the granulocytes called GM-CSF. The other being an actual WBC transfusion! Both of these have some significant serious side effects, although, these are often minimized. Right now however, they are being kept in the back pocket...sort of like an ace in the hole for when the cards start running bad.

There are so many more things going on, but, for now, Nick is doing a bit better. I am so scared to get my hopes up that he might actually be turning the corner. The crashing down is so painful. I have to keep reminding myself to take baby steps emotionally, just like Nick is having to take baby steps physically. They have sent another PCR from his blood to make sure his bone marrow transplant is still holding the tide against the evil CML. There are plans to do a lumbar puncture, possibly at the end of the week to check Nick's spinal fluid and be sure that it is still clear. In the meanwhile, he remains off his Dasatinib (for the long term right now). He is also off his ProGraf (anti-rejection drug) so far with no signs of GVHD rearing up it's ugly head. There are so many things. Nick has been without a fever for a few days, but, today he had a questionable fever, depending on which thermometer you believe.

I cannot believe Nick has been in the hospital for the past 24 days! Of course, I feel a little better now than I have since Nick came in here...but, I still feel like I can't breathe. I just want Nick to be well and be home. Your continued prayers, blessings, well wishes and positive thoughts for all of us and especially Nick are what keeps us walking through this valley of uncertainty. I just want Nick to be happy. He is, as always, a bright beacon of light. His inner strength and beauty shines out and brings happiness to those of us who have no idea how he continues to fight this fight with such dignity and grace. He is thankful for each day and he is, as always, a wonder and a testament to the fortitude of the human spirit to rise above any and all obstacles to this thing we call life. Words cannot express how much I love this man who is my son.

Wuz up dawg?

I have heard that my blog has been on the fritz. Well dog gone it, I hate when that happens. I do not know what was wrong and the blog was fine on my computer. Anyway, I deleted the "Too Much Rain" entry and then returned it to the blog. When I originally posted it I got some funny error message, so perhaps I did something wrong. I hope it is now fixed. If you still are unable to read it, will you email me please?

Things at the hospital have been rough. I have never experienced such emotional pain and turmoil in my life. Watching your child go through something like this is just horrible. Nick is still having a rough time with the breathing thing, due to the Aspergillus fungal pneumonia. I have been trying to explain to everyone how serious this is, but, it is hard for everyone to understand. I have a new analogy I have been using so I hope this helps.

The fungus is the enemy and they are attacking Nick's lungs. Normally your bodies "soldiers" the WBC and neutrophils would fight off the attack and all would be well. For some unknown reason, all of Nick's soldiers have disappeared and he does not have an IRR or stop loss! Therefore, his lungs are at the mercy of this horrible predator. Now basically these fungus dudes are camped out in their bunkers and they have figured out that Nick doesn't have any soldiers. The anti-fungal medicine Nick is getting are like guns. But, the guns aren't very effective when there is no one to pick up the gun and shoot it. So basically the guns are all lined up there doing nothing. They make for some good scare tactics because the enemy can see we have some big guns, so the fungus guys are happy to stand pat waiting for the first opportunity to attack. What Nick needs is for his soldier to come back and pick up the guns and start fighting. The doctors are trying to figure out what is the best way to get Nick's soldiers (i.e. his counts - WBC's and neutrophils (ANC) up so he can fight this infection.

The radiation treatments are complicating everything right now and the timing of this pneumonia with the radiation treatments couldn't be worse. Nick is scheduled to go for his last three treatments, starting tomorrow. I am not sure if the doctors will decide to hold the treatments or not. Nick's throat is REALLY SORE and PAINFUL from the radiation and nothing we have tried is working. While he had a better day today, he is still teetering on the brink and I need everyone to pull in all their favors with higher powers and get Nick to come out on top of this whole mess. Any positive thoughts and vibes you can send our way will be appreciated. It has been such an emotional roller coaster for Nick, Kate, Glenn, Sara, and I. Words cannot express the heartache and pain that I have been feeling of late, in combination with the daily emotional and physical toll of being at the hospital every day and watching my son deteriorate before my eyes. Keeping him fed with nutritious foods that he can actually eat has been a constant battle and so difficult in terms of transporting food from home and in and out of an isolation room. The stories I could tell. They are considering moving Nick to a room closer to the nurse's station for closer monitoring...finally! The nurse's have been so wonderful...it is the only way I can come home at night to sleep, knowing that he has a good nurse their to watch over him. Nick has been very tired and he should not be having a lot of visitors at one time, so please call me or Nick before you come down. It is good to have people for short visits, but, not all at once. I must get some sleep...way too early of a day tomorrow.

Too Much Rain

The best thing one can do when it's raining is to let it rain.” ~
Henry Wadsworth Longfellow

Nick continues to struggle with this formidable enemy. The doctors made themselves scarce today, although Dr. Frosty has returned and came to see Nick today. Nick's breathing has not improved and it seems he has hit a plateau in his recovery on that front. This is of grave concern as this fungal pneumonia is nothing to take for granted. The doctors have decided to change one of his meds. They are taking him off the Voriconazole and putting him back on the dreaded "Ampho-Terrible," in hopes that this will be able to kick this stubborn fungus.

In addition, it has been decided to stop Nick's Dasatinib (the oral chemo agent that fights his PH chromosome + CML) in the hope that his counts will recover. Nick's WBC and neutrophil counts are very l ow and they need to be higher in order for Nick's immune system to function properly.
He needs these cells to fight the infection badly. Taking Nick off the Dasatinib is a gamble and we are all hoping it pays off for the good. The hope is that while Nick continues his radiaiton treatments, this will keep the CML at bay in his spinal fluid.

Nick continues his radiation treatments. He has completed EIGHT of the twelve to date. I think the radiation "fatigue" is catching up with him as he slept much of the day. It has been so hard to watch Nick go through this latest triple whammy of infection, radiation, and low counts. All of these things cause your body to feel horrible...so I cannot begin to imagine how it feels to have all three of them ganging up on Nick's poor body. It seems that I cry every night on my way home. Of late I am always torn about leaving him and I only go home because there is no where to sleep and I was exhausted from spending just one night in that horrible place. Have to go to bed...please keep Nick in your prayers and let him know that you are thinking of him with your cards, letters, emails etc. Nick is really not ready for a lot of visitors yet, but, he does need to know that everyone out there loves him and supports him.

They Shoot Horses Don't They?

Well today has been another frustrating day down at good 'ol Weinberg. A new attending doctor started today....need I say more. We do not know this one at all, he has never laid eyes on Nick and does not know his history from a hole in the wall.
After waiting to speak with him for most of the day, he finally appeared. No introduction, just walked in to Nick's room and first thing asks who I am??? What the hell??? I need to come up with a new response to that one...I am always so shocked when they actually "challenge" my being here, as if I don't have a right to be here, I usually say something like "I'm the Mom." I always feel that my presence has been discussed quietly in the hallways and my name taken in vain and God know what. Of course, most likely, I am just being paranoid, but, then again, maybe not. This new attending, Dr. Gasseous (name so because according to Nick, he stinks!) proceeds to talk about things in very broad terms, throwing out treatments that I know Nick did not understand with really no explanation as to the rationale behind it. He also has Nick take off his oxygen to see what his sats do on room air...well, within moments they began to plummet and his heart rate went up about ten points just sitting there. The resident began to request that Nick about put the cannula back on all the while Dr. Gasseous talked on about Nick's complicated case. I sat quietly and listened, waiting for my opportunity to ask questions etc. Well when Dr. Gasseous was finished, he pointedly asked Nick if he had any questions or concerns, then proceeded to bolt out of the room. The resident, Dr. Harvey, knew that I was not happy and even hung back to say, "Uh...I feel like we have left some questions hanging...." Uh....no duh! I was so upset, I couldn't even speak, I then told him that I couldn't really talk right then, because I was either going to cry or blow my top and say something I would regret!

After the room was empty, the nurse came back in to ask how it went....Nick & I both groaned.
I told Nurse that I felt the MD was rude and disrespectful to me. Then after she left I started to cry because I have just REALLY HAD IT WITH ALL THE BULLSH*T AROUND HERE!! The idea of this new attending starting off like this, well it just made me so angry, frustrated and upset, bringing all my pent up sadness and fear! Don't they understand...I just want Nick to be well! I do have important insights and observations to be offered. I will demand that my role be respected and validated! Nick is going to give Dr. Gasseous what for tomorrow and let him know wuz up wit dat yo!

My new intro is going to be as follows: Hello, Dr. So and So, my name is Diane. I am Nick's Mom and I have been his private duty nurse for the last TEN MONTHS! I have twenty-eight years of critical nursing experience and my input will be respected and valued as part of Nick's health care team. I want the best for my son, I want him to be well, and I will never waiver in my loyalty to him.

Maybe this will help them to understand why I am so tenacious and unwilling to let them keep me down for long. Nick has not fought this hard for this long for it all to come unraveled now. Nick even said we will get a new attending if we need to, or we will move to a new floor, or we will go to a new hospital...I don't think we will have to go to that extreme, but, today has been another blow to my fragile emotional state. I don't think these doctors know what it is like to have to watch someone you love go through something like this for so long. I know that Nick is just one of many patients to them, but, HE IS MY CHILD AND HE IS MY SON!

Nick continues to struggle with all the complicated issues involved with this current battle. He is still on oxygen and still working hard to breathe. The radiation treatments continue. Today Nick completed #7/12!! The down side: his counts remain low with WBC = 600 and ANC = 180!
Platlets = 35 and the Hct. (which I do not believe) is 27.6. Nick continues to have fevers almost every night despite continue IV antibacterial and antifungal therapy. My nurse sonar is pinging again and I seem to be in a constant state of worry. The nurses have been wonderful, despite the reputation that I am sure proceeds me. I really do not feel that I am such a pain, but, even if I am I do not care. My head and my heart are in the right place and the rest of them be damned. Dr. Frosty returns tomorrow, so hopefully he can help us in our quest for information and communication with the attending and the house staff. For now I am signing off, I am tired and I need to calm myself down.

P.S. - Dr. Gasseous did return to talk with us again, as I guess our nurse let him know that we were quite upset (or at least I was and I think Nick was too!) and he did spend a little more time and we tried to smooth things over and get off to a new and better start. Nick and I were not completely won over, but, it was a good start.

P.S.S. - Oh yes, that's my new Stryker that I ordered in the picture. I can't wait until it arrives so I can start shootin' stuff!

The Best Medicine

It has officially been Monday for a few hours now and I was supposed to be in bed thirty minutes ago. Nick has taken to giving me strict bedtime instructions before I leave the hospital. But now I have the parent's revenge, I don't do what he says! Ha! Wait until he tries to take my keys away because he insists I'm too old to drive. This will be a funny one as both he and Sara insist I cannot drive now. So since I must go to bed, I am going to keep my blog subject matter to CUTE (thus this adorable picture) and FUNNY (thus this crazy song I found for my play list).

Nick is hanging in there and I will post any new updates tomorrow. Nick's counts have continued to drop and he has to resume his radiation treatments this morning. Please continue to keep him in your thoughts and prayers.

“Perhaps I know best why it is man alone who laughs; he alone suffers so deeply that he had to invent laughter.” ~Friedrich Nietzsche

“You may forget the one with whom you have laughed, but never the one with whom you have wept.” ~Kahlil Gibran

Mountain Climber

Before Nick went in the hospital, we started watching Price Is Right in the mornings. There is a game on there called "Mountain Climber." The little Swiss dude yodels his way up the mountain and he is not supposed to fall off the edge of the cliff. Well right now Nick is that little Swiss dude and he is still climbing. Today he completed his 4th radiation treatment. We made a paper link chain to represent each day of the twelve treatments. And we take one off after he completes each day. He will now have a break over the weekend. Thank goodness as his counts have started to drop. His platelets are down to 102 from 170 and his WBC today were down to 750!! The nurse's and doctors postulate various theories as to why Nick's white count is now really low. The reasons in no particular order include: radiation treatment, infection, medications, Dasatinib, or just plain old neutropenic fever. Now I am way too tired to elaborate on these theories, but, suffice it to say, I am not happy that his counts are this low. If they are down due to radiation treatments, I am hoping that the weekend off will allow them time to recover.

Nick is doing better with his breathing issues. His oxygen requirement is lower and his sats are improved. However, he still has to be on the oxygen and nebulizer treatments. Nick is still having increased work of breathing and mild distress with any activity. However, today he actually took one lap, went back and forth to the real bathroom and sat up in a chair for a few hours. Today we discovered his oxygen wasn't working because it hadn't been hooked up to the wall correctly after a treatment. Nick was trying to sleep and he was very restless and could not get comfortable. He told me he couldn't breathe. Long story short we found the culprit and fixed it on our own. Apparently the respiratory therapist had not fastened the bottle back on correctly after one of Nick's treatments. This is the second time something like this has happened. Not sure what to say, but, you can be sure this doesn't help keep the worry meter stay in the green. Nick's appetite is slowly returning and as long as we keep bringing food from home he eats. The hospital food is just horrible! A pathetic state considering the high nutritional needs of BMT patients. Another story for another day.

Despite all the good news, Nick continues to spike a fever each night. No one seems to be able to explain the cause of the fever. Every night he has blood sent for cultures. His arms are like pin cushions between IV's and lab draws. How he can be having an infection on all this medicine, I can't figure out. It is possible it could be caused by one of his meds and or by the fact that he is neutropenic. Who knows?

This hospitalization seems interminably long. It is one thing when one is mentally prepared for a long stay, it is entirely another matter to be admitted not knowing when Nick will be well or when he will be able to come home. It seems there is a plot to keep us all in a state of sleep deprivation, high stress and low energy. It seems that we are paddling as fast as we can and getting no where fast. Need to go to bed...I am hoping to go to see my Gems compete tomorrow in Columbia, so Sara, Glenn and Kate will be on duty throughout the day. While Nick's counts are this low, he is more vulnerable that ever to bugs and germs, so any visitors must be in sterling health. Please send your love and support Nick's way in whatever way you can...cards, letters, email, FB etc. He really needs to know that people are still supporting him in this fight.

Honeycomb Hell

This is a picture of the kind of radiation mask that Nick has to lie in for hours at a time. Only Nick has to lie on his belly with his face down in the mask. Obviously, this is not Nick, but, a picture of some other unfortunate soul who has had to go through radiation treatments. Nick has the marks on the back of his neck, head, and spine.

Today was Nick's second of twelve radiation treatments. The treatments are hard on him right now due to his breathing being compromised. He is powering through as best he can and he has been such a trooper for all this.
Nick really did not want to delay the treatments any longer than necessary due to the fact that his last IT chemo was on February 26th. That seems like eons ago right now! The longer Nick goes without treatment, the more chances of the critters coming back. Nick has to have the oxygen mask taped to the "radiation mask" so the oxygen blows up into his mouth and nose. After he lies down, they basically clamp his head in place with another piece of mask so he cannot move even a little. If he has to get out of it, the treatment stops and must be started all over from the beginning. Nick has managed to get through the first two (two hours and ninety minutes respectively) without having to stop. Nick says it is very hard to lay still for that long and he has to keep himself from freaking out. He has been taking music down there each day to listen to while he gets the treatment. Yesterday, he took Pearl Jam's "Ten" and today he took the Avett Brothers, "Four Thieves Gone." We are going to make some kind of paper chain or representation of the days and count them down...anything to help us all get through this...then maybe we can have a post-radiation party! I will have more posts later on the radiation. Nick is sleeping right now. He is just plain tuckered out. I will try to post again with other information.
Suffice to say, Nick is stable and making slow progress against the fungal pneumonia.

Thank you to all of you who have signed the STOP LOSS petition. If you haven't yet signed, why not?? Please would you ask your friends and family to sign the petition too! This is important. Just go to the side of my blog and click on the area where I have END STOP LOSS! Thank you.

Ancient Bruises

"And darkness spreads over the snow, like ancient bruises.
I'm awake and I feel the ache."

Nick has shown signs of great improvement since Friday! Thank goodness. The fungal lung infection/pneumonia is most like Aspergillus, but the final report is still out. In the meanwhile, Nick is on IV medicine to kill these wretched evil spores. The doctors also ordered a new medicine today to team up against the funginess.
The two medicines are called Voriconazole and Caspofungin. Nick is still on oxygen and while his breathing has improved considerably, he still gets easily taxed by any simple movement. I am hoping he will continue to improve with each day. His appetite is better, so he has his work cut out for him to put back on the many lost pounds of weight! The decision on whether or not to start radiation is still hanging fire. It is hoped that Nick will be stable enough to start tomorrow. I won't know until I get to the hospital today. Nick is still hooked up to monitoring of his VS and oxygen saturation, but this to me is a good thing, because then the nurses have a continuous read on his status. Yesterday there was quite a parade of people through to see Nick from his regular doctors, to the Infectious Disease, Pulmonary, and Radiation Oncology people. In addition, we had visits from Nurse Lovely and social worker Kindly. They are a wonderful support for both of us.

I am much relieved that the problem has been diagnosed and is seemingly under control. However, this fungus is some serious business, so it is a new worry on the list. I am quite exhausted so I will try to post more later. I hope Nick will soon be well enough to have some visitors. Please keep the good vibrations coming his way. His spirits are improving slowly as well. If they do start the radiation treatments, there will be hopefully a small window of time that he actually feels slightly better, before the potential side effects kick into gear.

Fungus Among Us - Part Two

Today we were told that Nick has a fungal infection going on in his lungs. The samples that were taken in the bronchoscopy are growing some yet to be determined fungus. While it is good we know what we are treating, or at least one thing for sure, it is bad because this can be a very serious matter.

Nick continues to struggle with his breathing and any exertion of any kind, even talking, is a struggle for him. Due to the new info today, Nick was taken off Ambisome and put on Voriconazole IV. This is also an anti-fungal medication and he got his first dose while I was at home recovering from my stay in the chair from hell. Also, when I returned Nick was hooked up to monitoring and had a new nurse. It seems that when you are on oxygen greater than or equal to 60%, it is policy that you must be on monitoring and you must have one of the critical care RN's taking care of you.

I was very happy about all this extra attention because Nick should have had it yesterday. In the morning, the Respiratory Therapist came in to do a treatment and I asked her how much oxygen was delivered by the simple face mask that Nick was on...she told me it is hard to say but, maybe like 44%?? Then Nick was switched over to a high flow oxygen mask at 60% and his sats have been much better - he should have been on this all of yesterday as well!

I am not going to write a lot tonight, because I am so tired and I need to go to bed and get some rest. I am still very worried, but, I felt comfortable coming home tonight as Nick is now being monitored by machines and more experienced ICU nurses. A fungal lung infection is never good, but, at least we know who the enemy is now and therefore, we can plan an attack. I will try to give a better update on my next post. Please keep Nick in your thoughts and prayers.

I am putting the Bowling Ball Fungus on my player because it makes me laugh. And I need to laugh right now or all I will do is cry. Nick and I listened to this "crank call" this morning and we both got a big kick out of it. We hope you do to.

10AM

Well Nick made it through the night!! No new problems. All the new flavors of Skittles and Sprees were administered in orderly fashion. Nick slept through the Ambisome infusion, no adverse effects were in evidence. The nurses changed shift and Nick has his same nurse as yesterday, Nurse Joy. She is very nice and sweet. She saw how much he was struggling yesterday, so hopefully, she will stay on top of things today. I am hoping today will be QUIET and that Nick will begin to show signs of improvement. The doctors already rounded and they all appeared in his room this morning, hoping something miraculous had occurred. I feel that it is still a little early to judge yet as Nick only started the new medications at midnight and beyond. He will be taking his second dose of steroids this morning. (I guess he will be getting the chipmunk cheeks again, but, hopefully it will help his appetitie as well.) His counts for some reason are up today (higher than any recent values), which I am not sure what to make of it.
WBC =3,750 ANC = 1,988! Platlets - 116K Hct. 29.3 If nothing else, I hope the higher neutrophil count will help his mouth begin to heal. Keep Nick in your thoughts and prayers.
Florence Nightingale out!

3AM

Well Captain Nick is resting finally. The night has been somewhat uneventful....thank goodness for small favors. The problems arises when Nick has to get up to use the BR, which is often when they are pumping you full of fluids for "pre" hydration and "post" hydration and other what not. When Nick gets out of bed, even to the new throne, called a bedside commode, all bets are off because his body does not want to tolerate all this activity and he starts working really hard to breathe! I am hoping one of these new medicines will kick in and knock whatever germs are causing this right out of Nick's system. This is the first time I have ever felt the need to spend the night and so far no one has tried to remove me from the room. It has all been very pleasant, yet, exhausting, because there is no where to sleep, so I have mostly been catching up on blogs, emails, Facebook, old boyfriends (just kidding - don't have any old boyfriends) making lists of things to be done and generally occupying myself. The nurse will be in soon to start the Ambisome (loving called the "yellow devil juice") Nick has been on this before and his body did not like it too much. So I hope this time is better. I hope by this time tomorrow night, there will be an improvement in Nick's respiratory status. Peace out.

No Frills

Just a quick no frills post from Nick's hospital room. I can't post any pictures from here, and I don't know what kind of picture would do justice to the sick feeling in the pit of my stomach that I have been dealing with all day. Nick has been really struggling!! His breathing has become worse over time as each day here has progressed. Today when I arrived Nick was quiet and still did not feel well. He had a rough night with a fever and lots of people taking VS etc. Then after he got up to use the bathroom, he came out to his bed and was grey, breathing fast, and looking terrible. I called the nurse who checked his sats which were down below 90! Then I had to start raising cain as to what the hell has been going with Nick and what are they doing to help him! The doctor came and gave me the same song and dance...long story, let's just say, I didn't like his dance or his song. Long story short, the latest CT scan is now showing signs of infection/pneumonia. Therefore, the ID doctor (we like a lot) came and examined Nick and gave her orders. Nick will be starting some new medicines and the dreaded "Ampho-terrible." He has been on this before (back in the early days). It is nasty but, they feel strongly that Nick needs this coverage.

For now Nick is hanging on...and the hope is he won't end up on a breathing machine. We are praying that one of these medicines kicks in and starts making all this nastiness go away!! I have been sick with worry. Nick also spiked a fever today of 102F, which also adds evidence to the infection side of the diagnosis ledger. The only good thing is that this puts the OTHER BAD possibility farther down on the list! Because we don't want Nick to have that one either!

Depending on how Nick is doing, I am so worried that I may even have to spend the night. I have never felt the need to spend the night at any point in this process. But, I know Nick feels really bad and he has absolutely no reserve to even get up to use the bathroom. So right now, I am waiting to see how the night progresses. Nick is listening to the Terps game and Kate is here as well to keep him mind occupied with other things than how hard it is to breathe.

For all my medical buddies out there, here's the 411 on the medical stuff:
1. Fever - blood cultures done per protcol once/24 hours period
2. Results from NP viral panel - negative
3. Results from BAL - negative
4. Continues to run with low WBC (although up from yesterday) = 2290 ANC = 270
5. Hemtocrit - 28.7
6. No blood gasses drawn
7. Went from 6l NC, to some kind of face mask, but, I don't know what % O2 is delivers
8. Sats vary - usually running low 90's on O2
9. Resp Rate - up from baseline in 20's (already high for 26 year old guy) to 30's on bedrest, to 40's with ANY KIND OF ACTIVITY!
10. HR - high 130's, up to 140's with activity
11. After last BR trip his color was grey and he was using accessory muscles and nasal flaring
12. Nail beds dusky, pulses ok,
13. Chest tight, unable to take deep breaths; Albterol nebs q6
14. Still with only a 22 guage IV
15. NO ambu bag or mask in the room
16. Lytes stable - CO2 on lytes on low side
17. BP stable so far
Well, enough said for now...I will post again soon as I know something more. Please keep Nick in your hearts and prayers. For now, I don't think he is ready for visitors, but, I will let you know if that changes.

Catch Me

The glass fell from my trembling hand
And shattered into a million pieces.
Was it half empty or half full?
Did it ever really matter?

The doctors are still trying to figure out what is going on with Nick. There are many tests that are still being done and results pending from others. Nick will be repeating some of his pulmonary function tests (PFT's) to compare the results from now and from before his BMT. He will also be going for an MRI of his face and jaw area to see if there is any kind of infection going on there. The doctors decided to start Nick on ANOTHER antibiotic that is very strong, with lots of side effects that I hope he doesn't get! Nick is still on the oxygen and getting nebulizer treatments to help with his "wheezing." His mouth is still very uncomfortable and therefore, his eating has been limited to the fortified milk/Carnation Instant Breakfast shakes. The radiation treatments are still on hold right now. The doctors have a couple theories, but, no point of elaborating until we have a definitive diagnosis. It could be a simple as a viral infection or it could be something else all together. At this point, I am hoping it is the viral infection. Please keep Nick in your thoughts and prayers. He is still checking his email, facebook etc. Please call his cell to see if he is up for visitors and because his counts are low, no one who is sick should visit right now. Please let Nick know you are still with him in this fight....he needs everyone's support right now! If you want to send cards, letters, or other, you can mail to hospital or mail to home address and I will get things to him!! Mailing to home is usually quicker than going through the hospital mail system. For now I say goodnight.

Little Turtle Guy

I feel like this little turtle guy is Nick trying to make it to the safety of the ocean. He is still just a newborn in bone marrow transplant years. He is so vulnerable out here on this great expanse of beach. The tiny steps are excruciatingly slow and painful to watch at times, but, I cannot take the steps for him. I can only stand guard and do what I can to protect him from unseen dangers.

On Monday, Nick was admitted to the hospital again. Dr. Pants felt that this was the best course of action considering Nick's recent collection of symptoms. Nick will be treated with IV antibiotics. Blood tests were done, chest and sinus CT scans also. The radiation treatments have been put on hold for the next 24-48 hours, depending on Nick's progress. My biggest concerns right now consist of one old and one new finding. The old is his weight loss and his inability to really eat any solid food due to the condition of his mouth. For now he will have to stick with soft foods and lots of shake type drinks.

My new concern is what is causing Nick to have low oxygen levels. After Nick was admitted, they checked his "sats" with a machine called a pulse oximeter. Nick's level was very low. Nick has never had any problems with his oxygen saturations in the past. This is not a test they do down in the clinic area, so who know how long this has been going on. The doctors have yet to come up with a diagnosis that explains why Nick's O2 sats would be low. In the meanwhile, Nick has to be on some oxygen to keep his sats closer to normal. He is currently on what is called a nasal cannula which has little prongy things that go in your nose and blow oxygen up there. Of course, he doesn't like it, but, his sats are not even normal with the nasal cannula so he has to wear it.

I am not surprised that Nick was admitted, but, the ride home with just his coat in the car made me so sad. I do not like him being in the hospital and I miss him already. I am hoping that this will be just a small blip on the radar and soon this little turtle guy will find his way to the safety of the sea.

Golden Fog

I have been remiss in my posting lately, mainly due to the fact that I have not had the energy to write anything at all creative or positive. I chose this picture because it is just beautiful and I could use some beauty in my life right now. The name of the picture is "Golden Fog." I feel like I am in a fog...but, it is not golden! It is cold and damp, and dark and I cannot find my way out of it. I hate fog. I hate feeling so helpless to do something to help the ones I love. Between the stop lossing of my soldiers and the illness of my son, I have not been in a very good place lately.

Nick has not really been feeling well for NINE MONTHS now. It is hard for me to grasp that he has been going through this process for that long. I just want to state for the record that I can't remember the last time he has really felt good. Since last week, my nurse radar has been on high alert and I am sorry to say that it has once again proved to be a reliable predictor of things to come.

Last week Nick's symptoms included, but were not limited to the following: headache, neck pain, lower back pain, mild cough, pain in his legs, numbness and tingling of one of his arms, fatigue, fatigue, did I say fatigue, as in tired all the time. GI disturbances, shortness of breath, rapid shallow breathing, wheezing noises with deep breath, activity intolerance, limited reserved to do anything, pale skin color, rapid pulse, mouth pain and sensitivity, loss of appetite, painful mouth sore where he bit his cheek and it still hasn't healed in over three weeks, dry mouth, cracked lips, painful acne/zits caused by Dasatinib, and I'm not even going to address the emotional consequences of feeling this shitty 24/7. So....

Thursday morning we get a call from Dr. Frosty, he tells us they do not want Nick to get his treatment (LP & IT chemo) because it will be too close the the radiation that is due to start this Tuesday. OK...I guess?? Nick is concerned to miss a treatment, but, the doctors seem to think it will be ok. We go to hop anyway to have Nick's labs drawn and see doctor. Nick proceeds to tell Dr. Frosty about all the things above, a brief examination takes place. Dr. Frosty tells Nick he looks great to him???? I think Dr. Frosty needs to get his eyes checked....immediately. Turn the burner up and bring me to a boil! Is my head still on my shoulders, cause it feels like I just blew my top.

Counts come back low again...WBC down to 1150, ANC 450's, Hct. 32?? So much for the "upward trend." Discussion of giving Nick some blood, just to see if it helps, but, it is already 3PM so we can't get blood on Thursday. So we will wait until Monday to get the blood. We head for home. I am quite demoralized, BECAUSE NOBODY EVER LISTENS TO ME WHEN I TELL THEM THAT THERE IS SOMETHING WRONG WITH MY SON!!!!!!

Fast forward to Sunday: Symptoms have continued and or worsened. Nick has been running a low grade fever 99's for past two to three days. Today it was up to 38.1C = 100.5F. The infamous "look" has returned, along with puffy eyelids, paler color, cough has worsened along with spells lasting like 20-30 minutes of coughing. Appetite has been fair and luckily Nick has been able to maintain some food and fluid intake. His wisdom tooth was bothering him on Sat. so we called dentist and oncology MD - they wanted him to start on antibiotic, so now he is back on another med...and still having fever through antibiotic. His cheek and his lip still appear swollen on the right side of his face where the wisdom tooth and mouth sore are acting up. Nick was supposed to go out to dinner with Kate tonight, he did not go, because he just did not feel well enough. I wanted to call the doctor tonight, Nick did not want me too. We will be there bright and early tomorrow, so I guess that is soon enough to get this all sorted out. And to rub just a little more salt in an already painful wound, Nick is supposed to start RADIATION on Tuesday!

I really don't know how this will all go down right now. I am worried and I am so tired of fighting the system. It is like no one can do anything until it is an emergency of some sort. I really don't know what more I can say. I feel like a zombie just going through the motions. How many times can you bang your head into a brick wall before you lose consciousness? Nick has to get a lot of scans and X-rays tomorrow in preparation for the radiation treatments to begin on Tuesday. It will be a long day. One bit of good news from last week: Nick's spinal fluid remains clear of any detectable badness! Wish I had more good news to throw your way...but, the reality of the situation is that it mostly just sucks really bad right now!

So I want to title this post "Life Sucks" but, thought better of it, because life is life and it's better than the alternative. So I asked SARA what I could call it instead and thus the title. Oh yeah, and if you haven't signed the petition against stop loss, PLEASE DO SO TODAY!! This will make me happy for a little while anyway. I will post the link on the right side of my blog. And please tell your friends, I bet they don't know anything about stop loss! Please educate them.

No More Stop Loss

Ladies and gentlemen....
We interrupt our regularly scheduled programming to bring you the following announcement:
Despite Obama's campaign promises to begin drawing down troops in Iraq and his recent plans "to withdraw most American troops from Iraq by August 2010 but leave tens of thousands behind to advise Iraqi forces," things are not always as the seem.
Right now, soldiers who are supposed to be getting out of the Army are being stop lossed and forced to remain on active duty and deploy back to Iraq or Afghanistan. In addition, soldiers that are actually OUT OF THE ARMY are also being called back to active duty from what is called the IRR or Individual Ready Reserve. This is a pool of soldiers that can basically be "reactivated" at any time, even though they are out of the Army. The IRR is supposed to be used only in cases of "severe emergency" and gives the President the authority to call up these soldiers as needed. Apparently this authority has been in effect for a long time, despite no evidence of "severe emergency" other than the dwindling ranks of volunteers for the military.

This involuntary recall and stop lossing is happening on a regular basis to soldiers who have no desire to give any more of their lives in the service of this country than what they have already given. In many cases, theses are men and women who have already served multiple tours, have families, have started college, may even be injured or have PTSD, but, it doesn't matter!! They call them back, work them out, pack them up and send them back to defend our country and our right to sit around with our feet up and not even remember that the "great war on terror" continues and well, somebody's gotta fight it, so it might as well be the ones who volunteered in the first place right? Oh, and let's not forget the line that is always heaved up when this topic is discussed...."Well, you signed the contract. That really sucks for you." It's not our problem that many were lied to about the fine print or maybe when they signed up they didn't figure on TWO WARS that are still going on after six and eight years.

Anyway, here are some examples of stop loss and/or involuntary recall at it's finest:

1) The Usual Suspect - just returned from Iraq in June of 2008. He is stationed in Fort Lewis, WA. He was in Iraq for 15 MONTHS! He is an infantry soldier with the 4th Stryker Brigade Combat Team. He is like 45 days from getting discharged OUT OF THE ARMY FOR GOOD.
But, hold up, wait a minute.....this just in, the 4-2 will deploy back to Iraq in the fall of 2009!
Fingers are crossed that those who are supposed to be getting out won't be stop lossed. What do you think will happen?

2) 13 Stoploss - he was already stop lossed! He was married and had a baby due. He had to sell his home and his wife had to move home with her family, so she wouldn't be alone when she delivered the baby. This soldier was a FISTER (read his blog if you want to know what that is) and he has had a really rough time getting past all the BS he has had to deal with since then. He is out of the Army now, thank God. Here is what 13 had to say in one small excerpt from his post called "Fear" on the Army's stop loss policy and how it affected him, "Can you imagine a combat trained Infantry Battalion losing 40% of its force? Neither could the Pentagon, and that's why there is a stop loss."

3) Army of Dude - this guy was also in a Stryker unit. He is also out of the Army, but, is on the IRR. He lives in a certain amount of fear every day, that the "brown" envelope will show up in his mailbox "inviting" him to report for active duty again. Dude is in school and is in the process of trying to get his life back together after a 15 month deployment as well. So far Dude has been lucky, but, his friend SL was not so lucky! He got his call back and needless to say he and Dude were not too thrilled about this. Dude started a campaign to try to help his friend and long story short, his friend was able to have his case reviewed and his orders have been cancelled. If you read nothing else, read his "Keeping the Faith: A Letter to President Obama."

4) Colby Buzzell - another soldier who had a blog (My War: Killing Time In Iraq) while in Iraq. Came home wrote a book (by the same name) about his experiences. He was out for three years when he got his little party invite. Go to his site and read about how he was one station away from being back in the Army when he was able to get approved for a medical "not deployable" due to his PTSD.

All of these guys are wonderful writers. They are intelligent and articulate young men who have literally been to hell and back. They all have a point of view and they are doing their damnedest to make a difference in the crazy messed up world. All of their sites are listed on my blog roll on the side of my blog. If you want to know more about stop loss, IRR, and what amounts to basically a back door draft, please take a moment to read what they have to say!! In addition, I am asking EVERYONE to take a moment out of your life and sign this petition to end stop loss and involuntary recalls of our soldiers. Please feel free to write and CALL your Congresspeople. It can and will make a difference. It is our duty as citizens to be informed. These guys could be your sons, your brothers, your husbands, so let's all take a moment to give a shit about what happens to them, shall we? The last time I checked the petition had about fifteen signatures. Not a great outpouring of support. But, that will change when all of you go and sign. I hope to see all my family and friends signed on to this petition the next time I check. Thank you in advance for your support!

Snow Day

Announced by all the trumpets of the sky,
arrives the snow.

by Ralph Waldo Emerson

Snowmen fall from Heaven, some assembly required.