Counts back up!

I picked Jessie up from CNMC that night and she did go back to college the next day. The doctors took Jessie off of her oral chemo med and after a few weeks her counts are back up. One of the nurses was surprised that this was her first  time stopping the medication stating that usually patients stop several times over the course of treatment. I think Jessie's body decided that it had had enough! 

Fast forward a few weeks, Jessie was put back on the medicine with a slightly lower dose. So far so good. She has a bone marrow check coming up next Tuesday which is two days before Thanksgiving so I hope to find out about the expensive test that they did regarding  her metabolizing the chemo. Maybe that will give us some answers. I wil update when we get the bone marrow results back in two weeks. 

10/21/13 update- low counts during maintenance

Mike and I got up this morning itching to go down to Children's hospital, but we also wanted to wait a while so Jessie would have time to sleep. We figured it must have been a long night in the ER at St Mary's hospital then waiting 2 hours for the Children's transfer team in the ambulance to arrive. Then two hours back to Children's ER just to wait to be admitted back to the 4th floor east wing. We arrived about 10:40 am. She had already called on my cell phone to check on us. She was receiving her first bag of blood (Thank God to everyone who donates) when we arrived. She had received 2 units almost 4 weeks ago when she had a regular check up and her counts were low. Her attending oncologist came to see us while we were there. He and the team are currently mulling over several theories as to WHY Jessie is experiencing low counts during her maintenance phase of chemo. He said it is rare that one would need a transfusion during maintenance and especially rare that she would need two transfusions within a month. Imagine that! Another rarity for Jessie... So they are temporarily suspending the chemo oral medication to see if that helps. Their first thought was that the leukemia is coming back, but they are doing bone marrow testing for that and she has been negative for leukemia cells since April 2012- Praise God! Secondly, a virus may be the cause this time but I think they are looking deeper because she wasn't sick last time. They are also doing an expensive test that will tell us how her body is metabolizing the chemo. It may be that her body is not metabolizing it well and there is a build up that is causing the low counts. Another cause of low counts is sxcessive bleeding, but Jessie hasnt had anything like that. At any rate it seems that this current blood transfusion will hold her until next Tuesday when she comes for her normal monthly visit. More blood work will be done then and maybe we will have more answers then questions at that point. She texted me and said after her iV antibiotics she will be ready to be discharged so I'm going to pick her up tonight and then back to St Marys tomorrow if she feels well. 

Say a prayer! 

Fast Forward to 10/20/13

Jessie has been doing well with the diamox during the atra. She had a good summer and is now back at St Marys College of Md. She called tonight to say she has a fever of 101.5. She was on the way to the hospital to get blood work and get checked out as per the protocol. After the ER doc conferred with the oncology team, he gave Jessie a choice of whether she wanted to be admitted at St Marys hospital or Children's. she chose transport back to Children's and is being admitted tonight when she arrives. Mike and I decided that we would go down first thing in the morning unless she calls tonight and needs us. I told her I would keep my phone with me just in case. She is in good spirits and feeling ok. I'll write an update as things progress. 

Diamox working

So Jessie had a bumpy road after the spinal tap for a few days, but since she was done with that session of Atra , her extra production of csf decreased daily. She did miss 3 weeks of college was was tough to recover from. She ended up withdrawing from her chemistry class and tried her best to finish strong in calculus and her design class. 

I'm a little hesitant to talk about her current new maintenance cycle since it is going well so far. I don't want to jinx it. She had her bone marrow check Monday morning two weeks ago. It came back negative for leukemia cells so she is still in remission. Praise God!

Her maintenance cycle has ended now and she didn't have the debilitating  headaches like before. Thanks to her oncology team for figuring out the problem and working on a solution so my Jessie doesn't suffer. 

We are going to go on the vacation soon this summer that Jessie and I missed last year due to her long inpatient hospital stay. How sweet it will be to be at the beach with family!!!

Lumbar puncture completed

Jessie's spinal pressure was 42. It is supposed to be about 15-18.
Although a rare side effect atra can cause increase in production of cerebral spinal fluid.
They took off 16cc of fluid. Dr Schore said there's a limit to how much you can take off and he said that her body will make more in 2-3 hours. Now that we know what's causing the headaches we can combat them with medicine to decrease her pressure. She was taking a medicine called Diamox to do just that but apparently she's not taking enough of it. He tripled her dose per day and may increase it further depending on how she does. But the good news is that we definitely know what the problem is and now we can fix it!!

They're back :-(

Atra, atra, atra. Tsk tsk tsk as I shake my head. Apparently atra can in rare cases cause an increased production of cerebral spinal fluid. Of course we all know Jessie is a rare creature who got a rare cancer and now is getting a rare side effect. (Atra is the main chemo med that cures Jessie's type of cancer).

The scene is set at the beginning of the week:
Her headache seemed to be manageable so she went back to college last Monday evening. On Tues afternoon Jessie called me to say that her headache went up to a 5 when she tried to lie down and was not feeling well at all.
I drove to St Marys to get her and took her straight to Children's ER. We got there at 9:30 pm. She was hydrated and they gave her some oxycodone and sent us home at 5am.
She slept most of the day on Wed but her headache continued to get worse. The oncologist told us to come back to the clinic today since it wasn't getting any better and to not take anything by mouth because she would probably be getting an lp. Trying to follow instructions, Jessie didn't even take pain meds overnight and got much worse. At 6 am this morning she couldn't stand it anymore. We came straight to the Children's ER where she is now on morphine and feeling much better. They are getting ready to do the lumbar puncture now to relieve the pressure.

Headaches gone!

Great news! Her headaches are gone. She said, " this is the best I have felt in a week. I think that was it mom". "IT" was probably inter cranial pressure. Her oncologist ordered medicine to decrease the fluid and the pressure in her eyes after hearing that she was still having mild but annoying headaches over the weekend. It seems that the medicine is working! hallelujah!! The pressure is most likely caused by the ATRA medicine that she is taking which is the main "cure" for her type of cancer. She only has to take the ATRA for 2 weeks at the beginning of each 84 day cycle. She is in the beginning of her 3rd cycle. The ATRA will be finished this Friday for this cycle and she will be weaned off the headache medicine.

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.