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.