Fast forward to March 22

So Jessie has been doing ok with her visits at Children's until now. She just had her 2nd bone marrow check last Friday. Afterwards she felt a little bit of a headache which she attributed to coming off of the anesthesia. She rested Saturday and was getting ready to go back to St Mary's College of Md the next day. She was home the previous week for spring break.
Sunday she started getting a headache again. By Monday morning it was so bad when she was packing the car to leave that she had to lie down on the couch and she wasn't moving. It hurt to move, light hurt, noise hurt. At 7am I gave her Tylenol and sent her back to bed. She rated the pain a7 out of 10. At 3:30 pm I went down to her bedroom to check on her. I prepared myself as I walked down the stairs not sure what I would find. She was ok still squinting with pain but now it's a 3. I emailed the oncologist at Children's to let him know what was going on. He said if headache wasn't better by Tuesday that she should come down to be seen at the clinic.
Tuesday am we were headed downtown and spent the whole day there. She was seen by the oncology clinic as well as the eye clinic due to the fact that she is taking ATRA (high dose Vit A) and that it can cause some side effects like false tumor findings, increased inter cranial pressure and clogging of eye veins.
Due to her previous genetic history of optic disc drusen (calcium deposits on the optic nerve) it made it difficult to determine whether or not there was more swelling there then before. The CNMC Opthemologist suggested we go back for a visit to the Opthemologist that diagnosed her originally. I called to make the appt on Wed and they referred me to a Neuro Opthemologist which graciously agreed to see her the next day at noon.
Dr Katz in Bethesda examined her and long story short decided she needs an MRI to see if there is a small blood clot in her head. That's the first step. If it shows nothing then he wants to do a lumbar puncture to measure inter cranial pressure and test her spinal fluid. Jessie hates lumbar punctures because it caused her to have a severe week-long headache while she was inpatient during the summer.
She is having the MRI done now. Will update later.

6pm update: MRI - totally normal. No infection, no bleeding, no swelling, no blockages. Yeah!! Now we see how she does over the weekend.
She may need a lumbar puncture to check for increased cranial pressure. We will see how it goes. Hopefully the headaches will disappear!!

Happy New Year 2013!

Hi! Hope everyone had a great new year!
Jessie ended this year with a bang- we got her test results back from her bone marrow test on 12/18/12 (the first of many in the next few years) and it was negative for cancer! Also she met Santana Moss when she was there that day! It just happened that he was visiting kids in the oncology floor in Children's Hospital that day. He was so down to earth and modest. He was giving her a pep talk about hanging in there and sticking it out even though it was tough. What a great guy! I think I was more excited than Jessie to meet him. She is not much of a sports buff. Now if it had been a famous author....then she would have been pumped! But she was a good sport and was very polite and accommodating.
Her hair is starting to grow out as you can see and she is looking forward to her second semester at St Mary's.

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.