I was really expecting much better results. I just got off the phone with a nurse from the cancer center. Carly's counts are "stable" in her words. She told me she had just talked with our oncologist. The oncologist said to have Carly checked again in about 4 weeks. Here are her counts today:
hemoglobin 12.1
white count 2.8
ANC 1.2
platelets 62,000
on June 25 her counts were:
hemoglobin 13.1
white count 3.0
ANC 1.6
platelets 58,000
Not very improved in my eyes. I just don't understand what is going on here. We did the bone marrow test and found no cancer. So, what is up with her platelets. This is not very comforting to me. Makes me wonder if cancer is just looming around and hasn't reared it's ugly head yet.
The nurse also told me that the oncologist said to "watch for signs and symptoms". Great. More for me to worry about. I had thought we did the bone marrow on Carly to rule this out and put my mind at ease. Well, obviously nothing is ruled out and my mind is NOT at ease. It's racing.
I would really like to get to the bottom of this platelet issue. Not sure who can do that for us. This has gone on since May. I just don't know what to do. I just hate sitting and waiting for cancer to show up. That's just exactly the way I feel. This is a crappy way to have to live.
Guess that's about it for today. I'm not in the greatest mood after receiving this news.
Regression
3 weeks ago
17 comments:
Sorry your in a bad mood. Doctors can be so dumb sometimes. They say she's stable and then say watch for symptoms. What the heck does that mean?
I'm sorry that you didn't get better news! I will be praying for no symptoms, better results next time and for your peace of mind!
I would hate to have this worry hanging over me! Try not to dwell on the uncertainty! HUGS!!!
I'm sorry this news isn't what you want to hear. I hope and pray the next re-check will bring better news.
Ugh. I hate this for you. I am praying hard that the NEXT check up shows dramatic improvement. I know it's hard not to worry. I would be too. *sigh* Hang in there.
I can only imagine how nerve wracking this is for you. Hope the next test brings you much needed relief.
Sorry that there wasn't a change for the better. I hate that wait-and-see stuff. Hope there is a positive change soon.
I'm so sorry to hear that. I will keep you and Carly in my prayers.
And why would you be in a good mood?I am sorry that you have to worry for even just one moment.I am sorry that any of us who have traveled this road have to spend one minute wondering about numbers,bruising,low grade fevers,long naps ... any of it,that to others may be dismissed as a virus,a welcomed lengthy sleep and an active child.The whole journey,even and most especially after remission, changes the way we view even the most subtle symptoms.Hang in there.Uncertainty can take hold and ruin the magic of the now moments so try,please try, to look at the miracle of Carly today and not get too far ahead of yourself.Believe me... I know it is so very difficult.
Thinking about you...
Here from McKforum, just wanted to you to know I prayed for your baby girl. Maybe it's some weird anomaly? We've faced enough of those! Praying there's nothing lurking around the corner!
praying praying praying!!
You have a beautiful family. I will pray for you guys!
(((Hugs)))
I read your post last evening but had Ella in my arms and couldn't type very easily. I know we are both dealing with the low platelet thing. What I am wondering is, has Carly always had up and down platelets (of course I am referring to post chemo) or is this a recent thing? I just feel like Ella's have always fluctuated and wondered if this is maybe something "special" about our Ds kids. I am so sorry that you are having to be in this place of worry right now....it doesn't seem fair that you or Carly should have to go through one more thing. Just hold on to the results of that bone marrow test and the fact that there was no cancer. Maybe your doctor will find another reason and maybe it will apply to Ella as well. Hang in there!!
Must be so frustrating and worrying at the same time, I mean its only natural that you want answers so you can deal with things, look out for symptoms is such a vague term.....we all want our kids to be healthy and watching them go through any kind of pain is the worst thing for any parent. I have Carly in my prayers as I do so many of these wonderful children. Things will be fine and I refuse to think otherwise, all our children have their very own special angel watching over them.....
That is so unsettling. I have restless nights wondering about Matthew's numbers too every time he has blood drawn. It's so overwhelming and lots of information to take in to try to understand platelet counts, etc. I find it comforting to give Matthew a big hug whenever I worry a lot. Hang in there! Hugs!!
Hello,
I'm so sorry that you and Carly have to go through this... I am sending all my prayers for Carly...
I'm Hua, the director of Wellsphere's HealthBlogger Network, a network of over 2,000 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients). I think your blog would be a great addition to our Network to share your experience with others and connect with other bloggers with similar situations. I'd like to invite you to learn more about it and apply to join at http://www.wellsphere.com/health-blogger. Once approved by our Chief Medical Officer, your posts will be republished on Wellsphere where they will be available to over 5 million monthly visitors who come to the site looking for health information and support. There’s no cost and no extra work for you! The HealthBlogger page (http://www.wellsphere.com/health-blogger) provides details about participation, but if you have any questions please feel free to email me at hua@wellsphere.com.
Best Regards,
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