Make A Wish

Today when I arrived at the hospital Nick was on his way to the physical therapy room to practice walking up and down stairs. The physical therapy people are working with Nick to make sure he can do basic things that we all take for granted when we are healthy. Nick did great and hopefully this means he will be able to travel up to the second floor to his bedroom each night to sleep. Later I found out that Nick's chest CT scan had an unexpected "surprise." The doctors informed me that Nick now has air in his chest area (mediastinum) that is not supposed to be there and they are not sure how it got there. This process is called a pneumomediastinum. Nick is stable and not having any bad side effects from this air right now. It is being treated by putting Nick on 100% oxygen by a mask called a non-rebreather. The hope is that this will cause this air to go away within the next 48 hours.
Now this air had to come from somewhere...the options are a burst aveolar air sac in Nick's lung that then sealed back up (his lungs are find and show no signs of collapse.) If you get an air leak in your lung that is not good. It would be as if you lung was a balloon with a small hole in it and it would leak until all the air had gone into your chest area behind your breast bone. As the air leaks out of the balloon, the balloon collapses on itself and then it does not function as your lung very well. Generally it cannot re-expand without help from the outside. Also, the air leaving the balloon can cause problems if there is a lot of it. Now in Nick's case, the lung is not collapsed and the amount of air in his chest is small. So if it was an air leak of his lung, it was a small one and then it sealed itself off.

The other possibility would be a small hole or fistula in his esophagus, perhaps caused by a combination of factors such as radiation, vomiting, forceful coughing, and damage to the mucosal lining of the esophagus. This is not likely to be the case as Nick is eating, drinking and swallowing without difficulty. He has already had several swallow studies, but, Dr. Hallelujah came in today to let us know she wants to repeat it, just to make sure there is nothing going on there that has developed since the last test or that was missed.

Nick was more than a little bummed by this latest development, but, hopefully, the oxygen treatment will work and Nick will be back on the path to getting out of the Hop for good. We are still not sure when Nick will get the word that he can come home. There are still a lot of little issues and details to be worked out, but, we are all hoping it will be very soon. Nick's counts are rising, the only holdout being his platelet count, which is still on the low side. Nick's appetite seems to be improving each day and the IV food has been stopped for the moment. Nick is on a calorie count right now to make sure he is taking in enough food to gain back weight.

Nick will have to stay on high dose steroids for at least three months before they consider tapering his dose. The steroids are causing him to have some high glucose levels, which means he has to have his sugar checked and he has been getting some insulin when his sugars are too high. His liver enzyme numbers are climbing again. I am hoping these guys will wake up and realize they are going in the wrong direction. Nick has already had his photopheresis treatments for this week. Things went well with this part of the process, it is hard to know if it is helping or not. I know he has a nice big bruise on his arm from the huge needle they have to stick him with to get the blood out of his arm. I guess next time I'll try to take some pictures to show what is goes on behind the scenes. Have to hit the hay...more later.

Heartbreak World

It is late and I should be in bed. Instead I sit here in a somewhat zombie like state. The good news is that Nick's counts have finally started to rise! His neutrophil count today was 2370! I believe that is an all time high since January! The bone marrow biopsy was canceled because Nick's counts are all trending upward. Nick is doing so much better, it really is an amazing thing. However, his wonderful progress is tempered with a steady dose of the reality of his current lung status. For now, I will try to rejoice in the answer to our prayers, that Nick is showing steady improvement from the ravages that his body has been put through of late. Nick is working really hard at making strides toward the front door of the Weinberg building. We are keeping our fingers crossed that he may actually be able to come home by the end of this week or early next. He has many hurdles ahead with his nutrition, his photopheresis treatments and the doctors let us know today that he will have to remain on the full dose of steroids for three months! This is a long time to be on this medicine for it has many side effects. They are hoping to get him off the IV food, but, I am worried that he won't be able to keep up on his calorie intake and that he will slide back on the small gains he has made on his weight.

Nick's breathing and lung status are still the biggest areas of concern. Nick will have to have wear oxygen all the time for right now. His lungs have taken a bad hit from the graft vs. host and no one knows for sure if this will improve or if his lungs will always be the way they are right now. What I know is that this part of it is truly breaking my heart. I am very angry that this might have been caught sooner and it was not. I curse the phrase "the new normal" and yet that stupid phrase has never had a more profound impact than now. I am trying to wrap my head around all this and right now I cannot seem to find the energy to do it. Tomorrow is the last day for Dr. Hallelujah and I am very sad about that as well. We will start with ANOTHER new attending, this will be the FOURTH one since Nick was admitted 51 days ago!!! The concerns regarding Nick's level of care when he gets discharged are causing more gray hair and wrinkles. I have resigned myself to the fact that he will be getting most of his care and monitoring at home and all we can do is take care of him the best we can and pray that the safety net does not have a hole in it when Nick needs it. Onward through the forest we go...

The Wind Of My Soul

When the wind blows, the dark clouds often clear away and a beautiful blue sky is revealed. I am not sure what is happening or why, but, Nick seems to be showing some serious signs of improvement. Yeeee-haaaw! Not to get too excited, but, any progress in the right direction at this point is such a welcome change from what we have been dealing with for the past seven weeks! I still cannot believe that we have been at this since early March and here it is almost the end of April! If nothing else time has provided some healing and for that I am grateful.

Nick actually had a great day yesterday and today. He looks better and I think he actually feels better. His color is much improved due to all the blood transfusions he received at the beginning of the week. The blood has also helped his resting heart rate come down to a new low of 89 today! This is great for Nick, as he usually runs in the 110-119 range, and even higher with any kind of activity. Nick's other vital signs have been stable and there have been no fevers!

Nick's appetite is slowly returning and he has been eating a little more each day. I hope he will be able to increase his calorie intake enough so that he does not have to come home on the IV nutrition, but, I also don't want him sliding back on his weight. He weighed 140 lbs. the other day, some of it may be fluid, but, I think it is real weight gain! Yeah!! Nick still has quite a ways to go to take in enough calories to gain weight, but, it is progress in the right direction. His stomach pain has lessened, but, does rear it's ugly head every now and then. It seems like it is reflux pain, but, he is already on Protonix 2x/day, Reglan q6h ATC, Maalox prn, and nothing seems to help when he has the pain. Nick is still getting the IV nutrition via his PICC line every night. They have it "cycling" on for 12 hours and off for twelve hours. He has had some glucose elevations due to the steroids on top of the high dextrose concentrations in the TPN, so they have to put insulin in his IV food and check a fingerstick for glucose every so often. Nick really hates these finger sticks so I hope he can get off the TPN soon. Although, that may not solve the problem, as it is most likely the steroids that are causing the elevated sugars.

Nick continues with LOW COUNTS which is a big concern. All his counts have been running low, especially since the radiation. Prior to the radiation treatments, Nick's red blood cells and platelets had been completely stable, needing no transfusions. Now Nick's RBC's and platelets are having to be transfused regularly. In addition, his WBC's and neutrophils have continued to run VERY LOW! This is also being attributed to radiation, however, the most likely cause is due to the intrathecal chemo drug called Thiotepa. Apparently between the IT chemo drug and the radiation, Nicks "baby" bone marrow took a significant hit and the concern now is WHEN WILL HIS MARROW RECOVER AND KICK BACK INTO MAINTENANCE MODE??
Nick will be having a bone marrow biopsy on Monday to check to make sure that the leukemia is still in remission and also do some other testing to see what is going on there. The MD's may still decide to treat with some G-CSF (growth colony stimulating factor) and this will hopefully jump start Nick's low counts. The other option would be to continue to watch and wait and hope the counts return on their own. This would be hard because w/ no counts Nick would be completely vulnerable to a myriad of germs and potential infections.

Nick is still battling what everyone thinks is most likely GVH of the lung and liver. He is on IV steroid dosing once per day. He seems to be doing better on the current regimen of steroids, photopheresis, and Azithromycin. I am not sure what has worked...maybe it is all of the praying and as my Mom would say, all the "wailing, moaning, and gnashing of teeth," that have finally made a difference in Nick's breathing. Nick is still on the oxygen. Today they tried him on a nasal cannula @ 6L and he did well, as long as he wasn't trying to move around too much. Nick also got up and took two laps around the nurse's station. His leg muscles are getting stronger, less wobbly, and he is literally less "weak in the knees." His breathing rate is not as high after he walks and he did not drop his oxygen level at all during the walk. He actually walked on less oxygen for the first time tonight and his numbers were very encouraging. This is not to say that he is suddenly "fixed" but, progress is progress and we will take it!!

Hopefully, it won't be too much longer before we can start to think about getting Nick home. It will be a more complicated discharge this time due to the need for oxygen at home and the uncertainty about Nick's activity tolerance. Nick will still have to go back & forth to Hopkins quite frequently to have his labs followed, receive transfusions as needed and get his photophoresis treatments. Dr. Meade, the GVH specialist, said Nick will have to stay on the steroids and all these other treatments for at least two to three months, then they will re-evaluate Nick's lung status and make decisions about where to go from there.

I am trying not to get too revved up about Nick's improvements, you know, keep an even keel and all that, but, for the first time in what seems like forever, I am cautiously optimistic for the short term and breathing a sigh relief. The current attending who has been so wonderful, Dr. Hallelujah, will be going off service next week. This means we will have to start again with a new attending. I am hoping for a good listener and a smooth transition. We do not know this new doctor at all and this doctor does not know Nick at all! Very frustrating to think we will have to capsulize eleven months of treatment into a four or five sentence blurb! For now, I am not going to think about that...I am looking forward to the weekend, the beautiful weather, and spending time with Nick when he actually feels good. We hope to be able to get him out of his room for a change of scenery and we may even get him outside for a bit. The doctors have said he can venture forth as long as he does his walking first.

Here are two quotes that I found that I felt were a nice complement to this post. The first really says it all when it comes to how well Nick has learned to maintain a positive mind over body attitude throughout this whole process!

“I believe the single most significant decision I can make on a day-to-day basis is my choice of attitude. It is more important than my past, my education, my bankroll, my successes or failures, fame or pain, what other people think of me or say about me, my circumstances, or my position. Attitude keeps me going or cripples my progress. It alone fuels my fire or assaults my hope. When my attitudes are right, there is no barrier too high, no valley too deep, no dream too extreme, no challenge too great for me.” Charles R. Swindoll

And I liked this one too. When I read it, it reminds me to stay positive and think good thoughts.
That way we can all sprout wings and fly, avoiding the jagged rocks and heading straight for the clear blue sky!

“Build this day on a foundation of pleasant thoughts. Never fret at any imperfections that you fear may impede your progress. Remind yourself, as often as necessary, that you are a creature of God and have the power to achieve any dream by lifting up your thoughts. You can fly when you decide that you can. Never consider yourself defeated again. Let the vision in your heart be in your life's blueprint. Smile!” Og Mandino

Come To Me

“Just as treasures are uncovered from the earth, so virtue appears from good deeds, and wisdom appears from a pure and peaceful mind. To walk safely through the maze of human life, one needs the light of wisdom and the guidance of virtue.” ~Buddha

Nick continues his fight and I pray each day that I can find the light of wisdom to help guide us both through this maze. Small signs give us glimmers of hope, do we dare believe? Tears and smiles run together like the colors of a chalk painting caught in the rain. All we can do is hold onto one another, find strength in those that surround us with their love and be thankful for each small morsel of joy that we find along the path. It is never easy and yet I know that we do not travel alone. There are so many we see along the road and new ones come every day. They come and go like ships to a port in the storm. I cannot help but feel their pain, their sorrow, and sometimes their joy. It seems odd and yet it is comforting to know they understand the life we lead. We find solace in the company of strangers as we try to right our ship and put back out to sea. Alas, where is the beacon that will safely guide us home at last?

“You must be strong now. You must never give up. And when people make you cry and you are afraid of the dark, don't forget the light is always there.”

Roller Coaster

After all the craziness of this past week, thank goodness the weekend was spent quietly and without fanfare. Nick did not feel well for most of the week, including Saturday. However, Sunday was a better day with small improvements seen in some of the things that are making Nick feel physically off. There are so many things going on with his body right now, I can imagine he has forgotten what normal feels like. The steroids tend to make Nick restless at times and it also makes it difficult for him to sleep. Nick had less belly pain and a new medicine seems to be helping. Nick actually ate a few bites of food today. He sat up for a while and he actually got a little bit of exercise doing some ablutions. Nick is still on quite a bit of oxygen and any kind of activity is still stressful to his system. Today the doctors switched all of his medications back to IV in order to give his belly a rest of sorts. Many of his numbers are still off and the graft vs. host disease is a big concern right now. Nick is scheduled to begin the treatment to help the lung GVH tomorrow, called photopheresis. I am worried about this whole new thing. I know he needs it and they make it seem like it is a walk in the park. But, spending four hours hooked up to a machine that is sucking blood out of your body through a HUGE honkin' needle does not happen without risks. Not too mention the idea of "adding" a medication to your white blood cells, then running those cells under ultraviolet light to "activate" the cells so that the T-cells are no longer able to cause the GVH...well, hmmm, piece of cake, right? How will this effect the donor cells ability to fight the leukemia?? No one knows the answer to this one! And so as we crest the top of another huge drop on this freakin' roller coaster, I begin screaming, "Stop the world, I want to get off!"

Chillin'

Hey everyone. It is Friday night and I am writing this from Nick's hospital room. It is quiet and calm here. Kate is lying in bed with Nick cuddling and Kate's brother, Kevin, is here too. Nick's Dad is sitting at the table grading school papers and I am updating my blog. The Orioles game is on TV and we are all rooting real hard against the BoSox! Sometimes it can be like this...all of us just hanging out and chillin'. Doing regular stuff, spending time together, taking Nick's mind off all the other stuff.

This picture is from October 25th, 2008. My Mom and I had just gotten back for the "Light the Night" walk at Ripken Stadium. The weather was horrible, cold and wet. Nick wanted to walk, but, he was still too sick to be out and about in that weather. At this point in time, Nick was still in IPOP and was just starting to show signs of the evil GVHD! At the time, I thought Nick looked so thin, but, back then he weighed 67.8 kg or about 149 lbs! Now he only weighs 58.2 kg or 128 lbs.! He has lost his hair again due to the radiation treatment, but, he still has his beard.

Nick has been hanging in there the past few days or so. It has been rough for him emotionally and physically, as he is dealing with a LOT! I will try to go over the nuts and bolts for those who are interested later in the post. Despite all the obstacles thrown in his path, Nick takes a lickin' and keeps on tickin'! Today he actually got up and took a SLOW lap around the floor outside of his room. It was VERY HARD for him because his body is so weak and deconditioned, but, he powered through it and I am so proud of him. Nick has lost so much muscle mass all over his body, it is a wonder his legs can even hold him up. The fact that his lung capacity is so decreased also makes it very hard for him to tolerate any exercise. One of the best things Nick has going for him is his resilient nature and his stubborn willpower. He always says, "My shoulders are broad and my back is strong!" He also likes to say, "I am the captain of this ship!" And so he is!

God bless him and keep him and heal him! Since he took his walk, his oxygen sats are really up there so I hope this is a good sign. This is also day two of the steroids and the Azithromycin, so I am keeping my fingers crossed that something is helping. Please keep the positive vibes, prayers, and good wishes coming Nick's way. Nick really needs a lot of encouragement right now. If you really want to help Nick, please send him a card or two, write him a letter and send it to the house. I will take them to him. Our address: 207 Haverhill Road Joppa, Md. 21085 He needs to know that he is not forgotten and that he has so many people out there who love him and continue to support him in this fight.

I also want to try to get a hook-up with the Orioles and see if I can get some of the Orioles to come over here to see Nick and bring him one of those new road jerseys with "Baltimore" on it!!
If ANYONE has any connections with the O's that I could contact or you could contact, please let me know ASAP! I am trying to come up with any ideas I can to make each day something special for Nick, to try to put a smile on his face and bring some joy to his heart.

In the meanwhile, all of us who love Nick so dearly are trying to adjust our minds to this new turn of events. News like this always takes a while to digest. Usually we all sit and take it in, too stunned to say much...outwardly calm, but, inwardly feeling turmoil and pain. Wondering how many more "bumps in the road" there will be...wondering why anyone thinks calling these life altering events "bumps in the road" even remotely does them justice. Wondering how many more times Nick is going to get hit with the "very rare" complication of BMT! Well, it is getting late now. I must start to pack up and head out so Nick can go to sleep. I will update again soon.
Until then, please keep my beautiful son in your thoughts and prayers.

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.