Friday, January 23, 2009

No Spinal Tap Again

Note from Aunt Stacey:
Kristen asked me yesterday to post the update below. Sorry I just got to it now. Also, Brent and Kristen both are miserable with the Flu today. Not sure if they got it from Coop or not. They shipped the kids off to Nana's for the day to give them a rest and avoid infecting or re-infecting the kids. I spent the day with ViviAnne the other day when Coop was sick and have tons of pics to post. Check back later this weekend to see them:)

Also, fundraising for ViviAnne's treatment has not ended. The PayPal/Chip-In widget to the right of this page is incorrect. I'll work on getting that fixed ASAP.

Written by Mommy

I took ViviAnne to the clinic at the bright and early hour of 8AM to have her counts checked and repeat her spinal tap. If you notice below it did not work properly last week. Well, the doctor there today said that steroids, in her experience, can cause the spinal fluid to dry up some so if her fluid was not wanting to run/drip before steroids and she just ended steroids yesterday then the chances of it running/dripping today were slim. The ultimate decision was mine, but I opted to not even attempt the spinal tap to then have the chance of having to attempt to do it again next week. Three weeks in a row of spinal taps was more than I cared to tackle. So, I said we'll see ya next week. She will continue with her oral meds at home and the steroids are over until next month. She is feeling pretty good and her spirits are up. The steroids have made her belly pooch and her cheecks rosey so she looks healthy and happy. And I think, all in all, she is. 

Cooper is feeling better. For those of you who don't know he was throwing up all weekend. He still doesn't have much of an appetite but he is doing tons better. No one else in the house caught what ever it is that he had. We did send a stool sample to the lab to try and figure it out. He ate some recalled peanut butter crackers last week so the possiblity for salmonella, all be it slim, is still there. With no one else in the house sick it makes me wonder. 

All in all we are weathering it okay. I would not have said that 2 weeks ago. 2 weeks ago I felt like I had hit this wall and the wall won! But I've been to a therapist provided by the Cancer Research Center and she is great so with her help I am hoping to get back to feeling like a normal, calm Mom again.  Time will tell. 

Friday, January 16, 2009

Maintenance

Well we went to the clinic today to begin maintenance. And she did even though her ANC is 850. That is high enough to press on with chemo. She did well. We were able to see Jessi, a young 11 year old boy who was diagnosed within a week of ViviAnne. He is the kindest most gentle boy with her. While other 11 year old boys would not give her a second thought he lets her play on his video games and laughs with her a lot. He is too much. And ViviAnne adores him. So that was her highlight of the week, I'm sure!

After her Vinchristine push at clinic we headed over to the hospital to do her spinal tap. After 3 needles and about 7-8 sticks her spinal fluid would not flow and so Dr. B was not able to perform her chemo or send fluid off to pathology. We are scheduled to back Thursday of next week to try again. I asked, "what does this mean?" and he responded, "Nothing. It is not good or bad it just is." So that eased my mind some. I've been watching her pretty closely to make sure the multiple sticks aren't hurting her tonight. She seems to be okay. A bit dizzy when we left the hospital but after a nap that too passed.

When I went to pick up her MANY prescriptions today with very specific instructions with each drug the young female pharmacist came over to the counter to talk with me. She said that if this was her daughter and she was picking up all these drugs with this detailed of instructions that she would be over whelmed. I had already gone to my Mom's and gone over each prescription and wrote them down in a notebook. I took my notebook out at the pharmacy to double and triple check the drugs. The pharmacists said, "wow, you've got this down." And I responded, "I'd better. It is her life for the next 2 years." She started to tear up. You know it is bad when your pharmacists admitts it is overwhelming. And that is just the tip of the iceberg.

Monday, January 12, 2009

Good News for a Change

Written by Daddy

ViviAnne’s clinic visit today was very optimistic looking forward.  All her counts are up including her platelets and hemoglobin.  Her ANC (which controls her body’s ability to fight of infection) has creeped up to around 1050.  For reference, 1000 is homebound and 500 is locked down; New Years Day ANC was 16.  She is scheduled to have another spinal tap Friday which kicks off the maintenance phase of her treatment.

Maintenance chemotherapy - Chemotherapy given in lower doses to assist in prolonging a remission.  This will last 18 months but will typically be monthly visits as opposed to the weekly (2-3 times a week) that we have been currently undergoing.

In February, she will be able to start going to some normal kids functions like mother’s day out, Sunday school, and the YMCA (“Fun” as she used to call it.)

We know that we are nowhere near being out of the woods and that relapse is always looming over us.  But for today the news is good and we take celebration in a small victory.  Thank you again for all of your considerations and support for our families. Your prayers are working please keep them up.

Monday, January 5, 2009

Quick Update


I took ViviAnne to the clinic again today. Her platelets have come up some with no need for transfusion, thank goodness, and her ANC came up to 500. SO she is still home bound but she is hopefully on the climb up and will not fall back down again for some time. Her HGM is still only 7.9 and that is with the blood transfusion from Saturday. I was hoping for a big leap because you can tell in her eyes she is just wiped out. But like a little trooper she is up and playing. Because as a 3 year old, that is what she wants to do, PLAY! They checked her urine again today and there is still blood in it but not enough to send off any big alarms. We still don't have the C.T. results back from Saturday to know what is going on with her kidney stones but we should have those soon. We go back to the clinic on Wednesday for another counts check and urine check. Hopefully (fingers crossed) everything will come back up and clear. 

She is scheduled to begin Maintenance on the 16th of January as long as all of her counts are high enough. We shall see. A week delay in starting the next phase is not a big deal either. That is the answer I was given today at least. So, we're home and if she a has a good night tonight, the night terrors are back from her over night stay in the hospital, we might go to Gilda's Club for their preschool play tomorrow. We'll see. 

Saturday, January 3, 2009

Home at Last!

I took ViviAnne to have her counts checked Friday morning and they were all down. Considerably down. For about 5 days her urine was been VERY dark almost brownish but we had dipped it earlier in the week and it was fine. Well Friday evening I dipped it and it showed blood in her urine. With an ANC of only 400, platelets of 45 and HMG of 7.8 this concerned me. I called the doctor and they said to bring her in to the hospital. After testing her counts had dropped further and the blood in her urine had cleared up to only a trace amount (which is okay) and she was doing okay with all the other blood work (I'll spare you the details of those) and it appeared she has no infection or virus. So they landed on the blood being from her kidney stones. SO they gave her a blood transfusion and did a C.T and let us go home. Which is good because without a hard core answer is was nice to be allowed to go home since she looked good and all preliminary testing looked good.

Her ANC is only 16 now and her platelets are now 35 so she will go back to the clinic on Monday for another transfusion of platelets since she got her blood today. She is resting on the couch and doing okay. We left her port accessed because it took multiple sticks to get it done correctly in the past 24 hours and I couldn't see taking it out to have to put it back in within the next 48 hours. The Doctor agreed. YAY!

As to blood and marrow donations that some of you have inquired about, you can always sign up to do so in her honor but she can not get your blood b/c of the lengthy time it takes to process blood and the fact that we never know when she will need it. This is her 3rd transfusion and could be her last or could not be, no one knows. Also if she has received your blood in the past and she ever did need a bone marrow transplant then you (the blood donor) would no longer be a candidate to donate to her even if you are a match. So you can donate in her honor. I would.