Visions of Sugar Plums

It does not feel like Christmas in my heart.
I have no joy.
I wonder if I will ever again feel anything but the pain of losing my sweet son.

Nick's spent his LAST Christmas in December of 2008!!! When I think of that Christmas there are so many feelings. There was a sense of overwhelming sadness that this might be Nick's last Christmas. The fear and worry because Nick was NOT feeling well at all. The constant battling with the doctors to let them know that SOMETHING WAS WRONG! And always the guilt that I didn't do more to keep Nick safe and get him well. Here are some of the entries I wrote leading up to Christmas and Nick's leukemia relapse, which was a devastating blow to ALL of us and which ultimately ended up pushing his lung issues onto the back burner, which I believe led to his untimely DEATH from the doctors FAILURE TO RECOGNIZE SYMPTOMS AND THEIR FAILURE TO DIAGNOSE NICK'S LUNG PROBLEMS! Words written in red are my comments now on my notes from back then.

Monday, December 15th, 2008 -
Took prednisone 10mg today. Tomorrow should be off. Nick seemed very down today...quiet, spent day at home, but, did not work on Kate's quilt. Seemed sad & withdrawn,but, did not want to talk about it. :( Not sure if it's the withdrawal of the steroids??

Tuesday, December 16th, 2008
Nick punky all day. Went to breakfast at Fallston Diner. I went on my way to shop and studio. Nick went to try to get gel capsules and shop briefly, then home to watch Homicide. Nick laid on couch all day, tired. Face & eyes puffy, frontal and temporal headache most of day. Cough continues to be of concern to me!!!!! No fever. Emesis after went up to bed (Chinese food and coughing jag?) Had to repeat evening meds.
This is Nick's first day OFF steroid (10mg) in his week of alternate on/off. Not sure that this is the sole cause of problems. I am worried about the cough & cold that has been lingering for going on three weeks now. Worried that counts are not up and maybe even further down. Sinus infection??? We head to doctor tomorrow, so I hope Frosty can shed some light on this situation.

Wednesday, December 17th 2008
Nick still does not look good to me...face puffy, eyes puffy. Headache is gone for the moment. Appetite is decreasing somewhat. Today is on day for steroid. Will discuss with Frosty all the concerns of this past week!!
Seen by Dr. Frosty - chest CT done - clear. Magnesium low 1.2 - received 4mg IV over 2 hours. Long day at the Hop! ANC still dropping 860? Spoke with another attending (name??) still want to watch and wait...I'm Ok with that. (Note: CT was clear for infection, but this is when pulmonary function tests should have been done per the algorithm for pulmonary complications of BMT!)

Monday, December 22, 2008 -
Nick up all night with itching of hands, feet, back & chest. Did not sleep most of night (per Nick) came downstairs at 0630, slept on couch for a good while. Spent most of day on couch, general malaise...did not do anything, appetite way down! :( Did not work on Kate's quilt. No fever, unable to verbalize physical symptoms or other issues.

Wednesday, December 23rd, 2008
Nick's Mg level 1.1 - needed IV Mg 4mg. Went home due to airport Gems trip, Nick drove himself back down to Hopkins. Margaret called five minutes after we got in the door to say Nick's Mg was low and he needed to come back. Nick spoke with Frosty while getting his IV.

(Note: This was a TERRIBLE day. This is a great example of a "guilt" fest. I wanted to bag my trip to the airport, Nick wanted me to go. Instead of waiting at the clinic for Nick's Mg level, we decided to drive home and hope that the level was OK. If it wasn't OK, the plan was for Nick to drive himself all the way back to the hospital and for me to go to the airport. Of course, as soon as we walked in the door to the house, they were on the phone telling Nick he had to come back.
I wanted to drive him back down, but Nick insisted he was OK to drive himself. In hindsight, knowing he would soon be admitted for a CSF relapse of his leukemia, which explained one of the reasons he was feeling so CRAPPY and kept having such bad HEADACHES, Nick was in no condition to be driving himself anywhere. But in usual Nick form he wanted to do it and he could be quite stubborn when he wanted to be and as Mom I had to let him win some of these battles, but later I felt quite guilty about the whole ordeal! My poor sweet boy. God bless his heart.)

Thursday, December 25th, 2008 -
Nick not feeling well today. Very tired, spent most of day lying down or napping. C/O headache throughout day. Temperature 37.6 for high. Some itching of toes in late evening. Dreaming of combat fighting...reports thinking he was "kicking the bedroom window." Too tired to work on Kate's quilt. Peterson's over most of day. Remains congested with cough.

(Note: Nick was supposed to go to dinner with Kate's family on Christmas night. When he said he didn't feel well enough to go, I knew that was a bad sign.)


Friday, December 26th, 2008 -
Nick still not feeling well, .... emesis x i in morning, still tired and looking terrible to me. Also with tinnutis/pain in both ears (right greater than left) headache (frontal & temporal), questionable sinuses??, no fever
Called outpatient department and talked to triage nurse, she said to keep pushing fluids watch and wait.
(Note: WAIT FOR WHAT FOR GOD'S SAKE!!!! FOR SOMEBODY DOWN AT THAT GD HOSPITAL TO SEE HOW SICK NICK WAS AND BRING HIM IN FOR AN EVALUATION???? OH MY GOD HAVE MERCY!!!)
Nick went to see Dr. Diehn about his ENT issues. Dr. Diehn did not find any signs of infection...however, Nick has hearing loss in his right ear!!! Therefore the ringing??

Saturday, December 27th -
Nick woke up at 5:30AM - BR, then upon returning to room got very dizzy "like I was drunk" and the room was spinning...proceeded to vomit.

Went back to sleep then woke up and drank some water...that did not sit well and he threw up again. Then he came downstairs and had some toast for breakfast.

Later he took his medicines (Omeprasole, Valtrex and Gleevac) and then threw up again around 1:45PM. Not keeping up with fluids, no void since this 5:30AM

Called Hopkins - Dr. Daniella called! Yeah...so happy it is someone we know!

Other symptoms that continue: headache, tinnutis, right ear pain, cough, cold with blood-tinged mucous, dizziness and vertigo. Pale/pasty lips, still with puffy eyelids.
Still no fever....36.5 today so far.

It is now 3:45PM - waiting for Dr. Daniella to call back!
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Dr. Daniella called back...wants Nick to be admitted to 5A
We pack our gear and head for points south.

Nick very wobble and unsteady on his feet. Used wheelchair to get up to 5A.
Admitted to Room 5A-07. Admitting nurse - Jill Night Nurse - Irena

VS on admit - remains afebrile?? BP with some orthostatic changes noted. Sitting = 125/80's?? Standing = 109/60's HR went up with change...HR still 100's

WEIGHT - down to 151 pounds on admit (160 lbs. on 12/10/08!!! :(

(Note: WHY WAS NO ONE CONCERNED ABOUT A NINE POUND WEIGHT LOSS IN TWO WEEKS? THIS TREND WOULD CONTINUE FOR THE NEXT SEVEN MONTHS!)

Nick with labs drawn, IV started. Received 2 liters of NS overnight. Mg. x i for Mg. level of 1.1 Other labs unremarkable....don't have set from 12/23 to compare

Fellow covering wanted to start Prednisone for gut GVHD (due to vomiting?) I requested that they do not start unless they talk to the GVH team first. Dr. agrees to hold off on starting steroids

Nick took a po Ativan before we left for Hop, no emesis while I am there, however, has one emesis early in morning? Also, only one void that evening = only two voids for day!

Start to stay on 5A not off on good foot due to issues with nurse's and going behind the nurse's station; also drew Tacrolimus level even though he had already had dose....

FOUR MONTHS SINCE BONE MARROW TRANSPLANT!!!!

This was the beginning of a horrible, painful and emotionally traumatic admission for Nick. Nick would spend his LAST New Year's Eve and New Year's Day in the hospital. The news of Nick's CSF relapse was devastating and it was on this admission that Nick's CXR showed the first signs of his impending lung failure. These signs were pushed aside and forgotten in the downhill slide that would become the rest of Nick's life. Every detail of every day is seared in my memory. When I choose to recall them, they seem like yesterday.

My mother's heart aches and cries out for what Nickolas had to suffer over the weeks leading up to his last Christmas on this Earth. The words "Merry Christmas" will never mean the same thing in my life ever again.