After Thanksgiving 2012

Hi Everyone,
Hope you had a wonderful Thanksgiving! Jessie has had two check ups (with lab work only) so far at Children's Hospital, one in October and November. Her first bone marrow check will be in December right after she finishes her first semester of college! So far, so good.
Interestingly enough the doctors base the level of oral chemo medicine on her ANC level. Right now it is a bit too high which means they may need to increase her dosage on the next round. Her ANC is in the 2000 range (good, right?) That's what we wanted before! Now they want it to be 750-1500 and if she gets a virus it mostly likely will dip low like it did when she first entered college. So for now we have a reprieve. She is doing very well and is enjoying her freshman year.
This is Jessie getting checked out by her oncologist Dr Schore and Melissa Wills, nurse practitioner.

Oral Chemotherapy Medications and Cycles

Jessie has been on two new oral chemotherapy medications for almost a month now plus the ATRA for the first 14 days of this cycle.  I am told by the oncologist, Dr. Schore at Children's that she will have 9 cycles of oral medicines, each cycle lasts 84 days. I'm not sure how much time in between, so if you do the math just counting her time in each cycle that is a little over 2 years of oral chemo medicine. Each month she gets an examine by the oncology doctor and nurse practitioner and gets her blood work done. Every third visit she gets the added bonus of having a bone marrow check done. Those will be the fun visits deciding whether to let her drive back to college afterwards. I'm not sure about that one!

Jessie said that the medicine at first was zapping all her energy. I was glad to hear last week that she is starting to get her energy back. She has her first "visit" tomorrow at Children's and I am going to meet her down there for that. I think it will feel odd not having gone down there for a while after SO many visits over the last 8 months. I will post again letting you know how everything goes tomorrow!!
Caio for now.

Update: all went well at the appt. her numbers are all good. Jessie is a little nauseous at times from these medicines and spoke to the doctor about tweaking the anti-nausea medicine.

Immunity Returns!

Yeah! Jessie's blood work this week shows that her immunity has come up and she is ready to start her oral chemotherapy pills.
Her ANC is up to 1318 and her platelets are up to 113. Her hemoglobin is holding steady at 9.1 since her blood transfusions 2 weeks ago. Wow. Time flies. Feels like yesterday when I met her at Children's and she got the transfusions.
More good news - her college is so great. The nurse practitioner, Lee couldn't reach her by phone one day last week and was so concerned she looked up Jessie's schedule and sent someone to do a "well check" on her! What service! You don't get that at a big school. I'm so glad she is at St Mary's. They are taking great care of her. I feel like I have someone who really cares about her welfare and is my eyes and ears down there. Thank you Lee!
So tomorrow Jessie will start her oral meds and hopefully things will go a little smoother from now on.
I'll let you know! :-)

Blood work is back

The labs are back and show that Jessie still doesn't have much of an immune system right now. She is having a delayed reaction to the last chemo she received in the hospital. Her counts are dropping.
The good news is they may have bottomed out. There are signs in her blood work (monocytes in particular ) that are rising which is a precursor to her neutrophils rising. This should be an indication that her immune system will be coming back shortly.
Until then we pray that she doesn't get a fever. If she does get a fever and her counts are low, she will need to be admitted back into Children's hospital until she gets better.
I have one word for Jessie, "purell"!!

Back at School- Say a Prayer

Jessie ended up staying home for an extended weekend (from after the transfusions on Thursday night through Sunday night). She got in her car to leave and couldn't get it started!

After 20 mins of trying, we finally got it started, but I couldn't send her in a car that I wasn't sure would start when she needed it. So I gave her my car to drive back to school and I kept her car (I think she got the better deal!)

We dropped her car off to be checked out on Monday night. Still waiting to hear what they think is wrong.

Meanwhile, Jessie got her blood drawn today. We should get the results back tomorrow to see how her platelets are doing.

She was having some petechiae bruising (develops when the lining of small blood vessels is damaged, allowing blood cells to escape into the skin and tissue. It usually looks like freckles or tiny red dots) on her neck, ears and under her eyes.

Just When I Thought I Could Breathe

Good news is Jessie's molecular bone marrow test has come back for the third time- negative for leukemia cells.

Not so good news is that her counts are dropping at college. She had blood work done yesterday just before she was supposed to start her 3 oral chemo meds.

Doctors say there could be many reasons why this is happening. The three most likely reasons are:
1. A delayed reaction to her last IV chemotherapy
2. A blood clot in the tube which would skew the results
3. A virus.

Docs say they are NOT worried about this being leukemia because they have such great results from bone marrow tests.

Long story short - they want to see her tomorrow for an exam and for more blood work and they will decide where to go from here.

Stay tuned...

9pm- so the doctor said it is most likely a delayed response to her last IV chemo which she had in late July. He said we need to keep supporting her body until it has a chance to recover.
Meanwhile she just has to be super cautious not to catch anything. If she does and gets a fever with low counts then she will be admitted back into Children's hospital. However, if she gets a fever and her counts are not low then she can probably just get IV antibiotics ad not be admitted.

She got two bags of blood tonight. Luckily they had both of them there already at the hospital. The reason she is so hard to match is that she has what is called anti-Jka antibody in addition to being O- . Apparently there are many more blood types than the ones we all learned about in school! Now they tell me! The nurses talked her into coming home tonight instead of driving 2 hours back to school. Hopefully she will get some rest.

Beautiful girl, beautiful place

Today we took our first born and dropped her off at college. Normally, I think I would be fine with it, but this is slightly different since she just had surgery two days ago. Am I just fooling myself? I think I'm doing pretty well considering...only a few tears shed and only after we left her. Sara, my next one said, "You better cry when I go to college!"  I will Sara, I will.

This is the view from the common area in her dorm building!