Let me start at the beginning… so I don’t get too confused myself. I haven’t updated in awhile because honestly there was nothing to update. Jesse went for scans in July and came back showing no change. We rejoiced, camped some more, and prepared for her first year of full time school.
September – Back to school for Christine and Jesse (Jesse off to kindergarten).
October – play, work, school, camping.
November – Time change. I noticed that Jesse seemed far more crabby that normal. And she didn’t seem to come out of the crabbiness. I even asked her one day if she was taking accutane again behind my back.
Suddenly Jesse started complaining about a spot on her right leg in her upper femur. At first we chalked it up to growing pains. Yeah she might out grow some clothes that she has been wearing for 2 years! For a week, we went with that. But then the pain stayed all day, and one night she moaned all night long. Prior to her diagnosis, she did that to me one night. Needless to say I freaked out. Mike had been freaking for a day before I started to freak.
We called her pediatrician’s office. One of his co-doctors ordered an x-ray. At the same time, we called her oncologist. He scheduled an appointment to see her on November 12.
November 12 – Meet with oncologist. We told him our concerns. He schedules an MIBG (this is a test where they inject an isotope into Jesse that causes her tumor to light up under a special machine.) He also takes a urine sample.
November 19 – Get IV line put in by our oncology nurse and blood sample. Find out that her urine sample came back lower for the markers of her tumor.
November 20 – Jesse does the MIBG with no sedation. 2 hours of holding still. Really proud of her 🙂 Our nurse calls really excited that nothing new appeared in her scan. I didn’t feel as excited for some reason. And felt really guilty I didn’t. Our oncologist scheduled an appointment to see us 2weeks later. My “let’s see how much we can get done in one 100 mile round trip” issues kicked in. I requested that we move forward her cardiology and audiology appointments instead of waiting until January. I didn’t think a CT Scan would be ordered because of just doing the MIBG. Our doctor surprised me by scheduling a CT Scan for December 3.
December 3 – 8am with cardiology, 8:30am with audiology, 9:30am with radiology, and 1pm with oncology. Her heart and hearing results came back by 11am – both good. The doctor saw us early and the results of the CT Scan hadn’t returned. We talked about scheduling her next scans for July 2014.
December 4 – He calls me about the CT Scan. Good news: the original tumor has no change. Bad news: new tumor in lower right quadrant that is 5cm. He needs to do a biopsy to make sure it’s neuroblastoma.
December 9 – Jesse goes for meeting with her oncologist and then to Day Surgery for the biopsy. She can’t eat after midnight, and no liquid after 9am. I understand this, but the longer we wait the more she doesn’t understand we must do this for her safety. And I have the realization that all of this was mentally easier for her the first time. This time she is older and wiser.
At 1pm, she is taken down to the first floor for the ultrasound needle biopsy. The nurse from day surgery takes us down and asks if I want to go back with her, the nurse. Jesse began to cry for me to not leave her. I told her that I could stay until she went to sleep then I had to leave, but that I would be right in PACU when she came to. Jesse cried harder because she was scared. I don’t blame her one bit, but I am not going to lie to her. I think that would make it worse.
The radiologist cut a small incision in Jesse’s right side. She then took 10 samples from the mass, from different areas of it. Jesse then awoke in PACU. This was the fastest I have ever seen her wake up. I love the nurse she had in PACU. We met her during radiation, and I am so glad we got to see her again and wish her good luck with her pregnancy 🙂
Jesse’s oncologist gave her a prescription for liquid oxycodone. I didn’t fill it in Norfolk because I had Jesse, and she was wanting to get home. Our normal pharmacy didn’t have it, neither did another I called. They gave me the name of a pharmacy that might. They didn’t have the strength I needed, but they gave me the name of someone who might.
I called Professional Pharmacy at 5:39. They close at 5:30. The man who answered said he would wait for us to get there. He filled the prescription even though he had to write the information on the bottle and Mike couldn’t pay him because his computers were shut down. I just couldn’t believe he trusted us so much to let us have the prescription without paying. I am beyond grateful.
December 10 – Jesse is in pain. The incision doesn’t seem to hurt as much as her right hip. She and I did go to Professional Pharmacy to pay our bill. Thanks to insurance it was only $2.83. The pharmacist who waited for us last night did a juggling trick for Jesse. But she felt so bad that she didn’t smile. We are waiting to hear the outcome from the biopsy.
And tonight, I have put in a call to her oncologist (Thank God he is the one on call tonight – sorry to bother him) because I can’t seem to get her pain under control. He called me back in less than 5 minutes saying I could increase her dose. I really hope this helps her. So glad he is her oncologist and for all the team at CHKD.