Friday, March 4, 2011

Skyler made counts for another round of chemo today and also another lumbar puncture.  My experience with the home health nurse was so much better this time than my last.  I was already prepped and ready to draw his labs myself yesterday, but when she got here I told her about my bad experience before with the nurse and she was dumbfounded.  She told me I didnt have to worry about that with her and went on to tell me that her son actually passed away at Primarys due to infection so she is always extremely careful.  I immediately started tearing up and just felt this closeness with her.  Its amazing the bonds you can build in such a short time with people you dont even know who have gone through similar things with their children.  The rest of the time I just felt so calm and relaxed and actually trusted her with his line. The last time I felt like I could completely trust a nurse was when we were in the PICU.  I got really close to a couple of nurses there.  But yesterday I actually sat back and let her draw his labs and didnt get that crazy anxious overprotective mom feeling.  She was really good and Im so glad I was able to have a good experience this time.
Clinic went well too, as far as clinic visits go.  We had one of the first appointments of the day so there werent alot of people around, which was really nice.  I told the doctor about the weakness in his legs and she said it was a side effect from the Vincristine.  She cut the dose in half this week because of it and we will see how he does.  They did up the dose of the Methotrexate though.  Skyler did so well today.  He actually talked to the doctors and nurses which was a first and he did everything they asked and was so cute about it.  It was amazing I am so proud of him.  He also did great with his lumbar puncture as well.  He did get a little scared when we walked into the room, but who wouldnt?  Its a scary room with lots of scary looking machines.  I hate walking in there and Im an adult, I cant imagine how a four year old must feel.  The nurses were great with him though and had a helicopter for him to play with while they gave him the sleeping medicine.  I have to say I was so impressed with the RTU today (rapid treatment unit) They remembered me and knew that I am still kind of freaked out about germs, so when I walked in everyone in that room had already put a mask on without me even asking.  I cant even tell you how good that made me feel.  I was so appreciative of them for caring about my feelings and doing that for me, even if they did think it was unnecessary.  It was like a little burden of worry was lifted off my shoulders, and although it seems like such a small thing it was a big deal for me and I am grateful. 
Skyler woke up fast from the anesthesia.  He was awake before he even made it back to the recovery room.  The nurse said that right when he woke up he said "Im done and it only took one whole minute, Im good at this"  He is so funny.  When I walked back there he was as happy as could be and seriously high as a kite.  He has never reacted to anesthesia this way and it was hilarious.  He was super happy and saying the funniest things while he was swaying all over and saying "whoa".  He had everyone in the room laughing.  What a little cutie. 

I was looking through some older pictures of Skyler when he first got admitted and came across these:

                                                              He looks so miserable.

 We have just come so far, its hard to think sometimes that Skyler actually went through that. These past couple of weeks when Im laying in bed I will get flash backs of when he was so sick.  I have tried to block out some of the memories because its just too hard to think about, but sometimes they just hit me and its so hard.  I have no clue why its all coming back now.  As I was going through it and living the nightmare day in and day out I got numb I think to some of it, and I think thats how I was actually able to make it from day to day.  But now that I am home and he is doing better I think back to where we were and how close I came to losing him and its more than I can handle sometimes.  I have been having huge headaches everyday and will start crying at the littlest of things.  I hope this part passes soon and Ill be able to start coping with things better.  I think I just have a big fear of it happening again.  But I know we have been so blessed and many prayers have been answered and for that I am grateful.  I am also grateful for the continuing support, love and prayers.  I have the best family and friends.  Thank you all.


johnjillhuz said...

Crystal, I am so happy that his LP and RTU experience was wonderful. Seriously, how considerate of them to have masks on! I hope that homehealth nurse becomes your special everytime nurse.

Skyler is such a miracle kid! I am so happy with how he is doing!

When we left PCMC after the 7 1/2 months our social worker told me that in the next 2-3 months all the weight of what we just went through would hit us. The way you describe your feelings is similar to how my husband and I feel. During the hard times we were in survival mode, just making it by day by day. Now that we're home and trying to be normal the weight of the last year sometimes comes back and hits us and we cry over everything.

Cancer just does that. I don't think those apprehensive feelings will ever go away, but I think they will lessen over time.

You are strong and you've endured so much. You are a wonderful mother to Skyler, he is one blessed little boy.

Sometimes I find myself just starring at the wall or out a window. Everything is such a daze and the day to day tasks seem so mundane. It's a big transition. Thank you for sharing your feelings on your blog. It helps us understand one another.

Anonymous said...

I'm so glad this visit was better than last. I love our early clinic visits. No one is ever there.

RTU is so freaking great. They all remember every little thing. They even know Daphne's bunny's name. That she likes doritos when she wakes; but calls them skinny chips. Those things make you feel so much more comfortable. This last LP (When we saw you) we were in same day-surgery. I was a wreck. In the end things went down without a hitch, I just like RTU so much.

So sorry you're having a hard time emotionally. It is completely understandable. It is not fun, though. So I hope you're able to move past it soon.

You guys are amazing!

lea said...

Crystal, I have felt this same way recently. I have moments where it all comes back and I get emotional. When McKall just had her overnight stay last Thursday I was a basket case. I hide it well, but when I lay in bed at night I cant help but feel overwhelmed at all we've been through and the one night stay brought it all back. Our experience wasnt nearly as intense as your's or Jills, but I have had some of those same feelings. I just hope someday we can all "move on" as much as a cancer mom ever can. I wish you the best and are so happy you have a good home health nurse! That can make all the difference! Hang in..