One Month

Tuesday, July 17, 2012

I continue to be amazed at that weird time warp phenomenon that happens in life.....you know the one where time feels like it is going by so crazy fast AND incredibly slow at the exact same time. I heard a saying once in reference to raising a family that goes like this: "These are the longest days and the shortest years." This past Sunday marked one month back in the hospital. Can you believe that?? Does it feel like it has been that long for those of you "on the outside" or does it feel munch longer or shorter?? It is hard for Sean and I to believe that we have only know about Dillon's cancer for 2 months; 1-1/2 of which we have been hospitalized. It feels like a lifetime ago that Dillon and I sat in a room and learned about the mass in his chest.....and it was eons ago that I had to place calls to friends and family to break the news.....and then it feels like it was just the other day that Dillon and I checked back into UNM. Life and time is just so bizarre.

Dillon and I received acupuncture again yesterday.  Melisa and D had a fun and inspiring conversation. We were talking about summertime and how Dillon is sad and frustrated and disappointed that he is basically having to skip this summer, as far as the usual fun summertime activities that he enjoys. Melissa planted the idea that next year is going to be a double summer and that he will just have to do twice as much of everything fun...and they started talking about what those activities would be. It was such a healthy, positive, forward-looking conversation and Dillon even sounded happy and excited thinking about all of the possibilities.

My parents and Luca are actually in Albuquerque this week. They brought the 5th wheel down to an RV Park. Dillon is so very happy that Luca is able to pop in and out every day. Our big brother Dillon has returned. For the past several weeks (especially early on in journey) Dillon had no patience and really no interest in being with Luca. He would say..."Luca just takes too much energy.". But in the past couple of weeks, every time Dillon hears that Luca is coming to see him, Dillon just lights up.  On the flip side...Luca declared that he wished he were 18 so that he could either drive to ABQ in his own car every day (he would not have to wait for Sean or Nana to bring him) and if he were 18 that would make him old enough to be the one to sleep over with Dillon in his room. No longer does Luca complain about being bored when he is here. No longer is he looking for any and every excuse and opportunity to leave Dillon's room and go do something else. He is perfectly content to just stay by Dillon's side for hours on end.   Luca is the one who sat with D, holding his hand, helping him breathe and count and focus on Sunday during the port access (which had to be done twice because the first time was not quite right in the placement of the needle).  Luca kept D focused and calm, reassuring him the whole time, as tears rolled down his big brother's face.  My boys are back together emotionally, physically, and spiritually....something I feared they would lose through this ordeal. They are stronger than ever and I am so very grateful!!!

 Now a little medical update.... Big D's counts are rebounding beautifully. Yesterday his white count was 560 (over the weekend it was ZERO) and today (the day after acupuncture) they have tripled to 1500.  His platelets are recovering also.  He had both platelets and red blood cells transfused over the weekend.  We are still in the "resting phase" of the cycle. The whole cycle was slated as either 21 days or 28 days and they told me they would decide which it was when the time came. Well, it is going to be the 28-day cycle this time because it took longer than expected for his counts to drop, and then they dropped like a rock, and it takes time to get back up to a safe level; only to obliterate them again....such roller coaster ride my boy is on.  Today is actually day 21...so another week of rest. An x-ray last week showed a definite decease in the size of the chest mass, so we are going to skip the CT-scan that was going to be at the end of this first cycle. I know you are wondering why they would want to skip that.....well CT scans are very "toxic". They give a pretty substantial dose of radiation and over the course of cancer treatment that adds up and can actually be the cause of a secondary cancer later in life, so avoiding any extra scans is preferable. Basically, we know the chemo is working based on his counts dropping and recovering AND we know the mass is smaller based on the x-ray. At this point, it does not really matter what the dimensions of the mass are (i.e., exactly how much smaller it is) which is what the CT would be able to tell us....we know it is smaller and right now that is all we need to know to continue on this new chemo regimen.

Again....if you want visit, this is a good week to schedule it...before we get back on steroids and chemo. 

The ever present Celtics bracelet

Salt Rock adds positive ions and ambiance to our room

 

Dillon of Champions

See you soon :)))