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