I forgot to post yesterday. I was wiped by the time we finished everything.

December 17, 2013

Today back in Williamsburg, Jesse should have been having her tonsils out and allergy testing. Instead they put the Double Lumen Hickman Line back into her body around 9:30am CT (still trying to get used to central time versus eastern time… who knew an hour could throw you off so much..)

We started at 7am with a visit to ECHO/EKG. The lady was nice, but spoke so low I couldn’t hear her. Then a really nice nurse from C-clinic took us to where they have surgeries on the 3rd floor. Really great guy. Very compassionate.

We waited for awhile. Jesse has been having more and more pain. Some of it I wonder is from some depression over the situation. She is an introvert. She loves to be at home, and for potentially 6 to 8 months, we won’t be.

At 9, the OR nurse came to get us. Not overly friendly… basically said you can come on back and left us to find back. We meet the surgeon and anesthesiologist. After them where 2 OR nurses. They were very warm, friendly, and inviting. They allowed me to put on a zoot suit and go with Jesse until she fell asleep. I really appreciated this. I am not sure how Jesse felt about it.

Here is an image from http://pedsurg.ucsf.edu/:

We have had dealings with the same line before. You can’t get this wet. When/ If she showers, we have to use what is called an Aquaguard to protect the tape over the entry site. We have tried this in the past, and it hasn’t worked well.

Swimming is out. That will be hard because Jesse loves to swim.

At 10am I met the line nurse for the first time. She handed me a packet about how St Jude does tape and clave (we call them cap) changes. They do them every Monday, Wednesday, Friday on the tape. It is gauze tape… no sterile gloves. They do use cloroprep. Cap changes are every Friday… no masks are involved. No sterile gloves. Needless to say I had a moment. I told her that I wanted it done sterile. This is my go round with a CVL. She told me that I might be a candidate for sterile changes because I had done them before… and that they were very mechanical.

I don’t think we got off on the right foot. I don’t seem to get off on the right foot with line nurses… I want to be too clean.

On top of that they were only going to give her two doses of antibiotic… no running antibiotic like last time. Red flag in my mind, but I started to figure that with the latest news about superbugs… they had a reason to not give that.

We were allowed to go back into Recovery and wait for Jesse to wake up. Afterwards, we were able to take her for some lunch.

After lunch I was scheduled to go to the chaplain’s office to meet with him. I do believe… but this just rubbed me the wrong way. Here I am running all over St Jude’s and you want me to find the chaplain for a meeting? At CHKD, they found me. They took into account that I was busy and I really appreciate them finding me.

But I hated to waste his time… so I went to office, told him thank you, but that I would find him when I was ready. Turns out the guy wasn’t even in, it was someone else.

The nuke med nurse called me around 1:30pm CT. She could give Jesse her MIBG injection 2 hours earlier than scheduled. We jumped at the chance. This did allow Jesse to come back to the Grizzlies House by 2pm to have a nap and down time.

Mom and I saw on our return that Santa was coming to the House for dinner. I asked Jesse if she wanted to go. She did perk up, but then got really sad. I asked her why. She told me that she’d been bad, and Santa wasn’t coming to see her. I assured her that was not true, and that he was. She is very scared that he won’t find her here. But I have planned ahead to make sure that “he” does find her here. And to let her know he hasn’t forgot her. She wants a “Doc McStuffins Doctor’s Kit” badly. I have it hidden in my things. Thanks Amazon and early ordering 🙂

She also wants a toy guitar, and I have coordinated with Child Life to “hide” that in the hospital to arrive on Christmas day. I really like the lady they have assigned us to. She seems very down to earth and just like our Child Life people back home. (All the Child Life we have meet here have been wonderful and willing to help – same at CHKD)

At 5pm, we went downstairs to see Santa and get a present. The House was also serving dinner. Jesse ate a few bites of ice cream, and that was it. We did meet a few parents, but Jesse was feeling horrible. We took her picture with Santa (I am not sure if we should have… she looks like she did in the picture we have on our mantel where we knew she didn’t feel good, but couldn’t figure it out in 2010). Mrs Claus gave Jesse a toy.

December 18, 2013

Jesse woke up twice screaming of pain. I took her to the bathroom. That seem to alleviate the pain. Not sure if moving her helped or emptying her bladder. Plus at one time I could give her more morphine.

Between those times, I tossed and turned. I was planning for a fight with the line nurse. Her language of “candidate and very mechanical” torqued me off a tad.

At 8am, we met with her. I flat out told her I wanted sterile. That I wasn’t a spring chicken. She listened to me, and then we talked about my concerns. Turns out that St. Jude has never done the sterile tape changes like I am used to… they don’t even have the same kits. Once she showed me the kits they do have and explained their research has found no significant improvement in sterile over not sterile (but still very clean).

I did tell her I wanted masks on when anyone removed the cap. When that cap is off, it is a direct line to the heart. She told me she’d get me the supplies I need. We decided to try the gauze clean version first. IF the cloroprep is too much for Jesse 3 days a week, then we’ll go to the sterile method with the clear window. I am concerned with the cloroprep, because for Jesse at 2 to 3 years old, she would scream every time.

After we left her, we had time before having to go to triage for a blood draw. Jesse became very anxious over this because she thought they would poke her. Her blood pressure read 131/83. After we showed her that we’d be getting blood from her tubies (CVL)… she did calm down into the 120s…

I think that a lot of the blood pressure in this instance was due to pain. I had given her morphine at 9am.

Our next stop was D-clinic to see the nurse practitioner. As we waited a research nurse found us. She asked if they could use Jesse’s left over blood products in research and for the Pediatric Cancer Genome Project (Click Here to Learn more). To me this is a no brainer. If we can figure out how to turn off these crazy cells and save lives… let’s go.

The nurse practitioner ordered more morphine for Jesse. This did knock her out. She also marked her for a bone marrow biopsy and put LMX (a numbing cream) on those areas.

While Jesse slept. I talked with the social worker. I did voice my frustration over the chaplain meeting. She asked about my marriage. She asked if we had weapons in the home, if we were on antidepressants. Things she has to ask for her job. She also will help me get Jesse squared away for school and maybe see a psychiatrist to help with the depression. I don’t want her on depression medicine. I want her to learn ways to cope with her homesickness and find the positives here.

Jesse did tell me this morning that she hates the hospital. I can understand that… she needs someone/ something to hate. I tried to explain that they want to help her get better. I think she hates the cancer too, but how do help a 5 year old cope with a disease that she now understands a little better.

At 12:30pm, we went for the MIBG scan. They let her watch “Despicable Me” while she was being scanned. I am really proud of her for holding still for over an hour, even while telling me that everything itched. I would scratch her head, nose, and chin when she wasn’t being scanned by that part of the machine.

Jesse not having sedation at the MIBG threw the nurse practitioner off. On the schedule they only put combo procedure… didn’t say what it was. I had asked Monday when I meet with anesthesia for her to not have to be sedated for it. She did it for 2 hours in Norfolk in November…

Luckily I had kept her NPO. I think that isn’t helping either. She ate a bite of ice cream Tuesday night at 5pm. From then on nothing. By this time it was 3pm.

At 3:00pm, they took us to the procedure room (more like rooms) to do the bone marrow. Jesse didn’t want to go to sleep. They were able to get the samples, but she did have to go to sleep. Getting bone marrow is like auggaring a tree.

By 4:45pm she was awake enough for us to go get food, come back to the House, eat two bites, and declare she was full.

Around 7, we called home to talk with Mike and Christine. I am not sure if this helped Jesse or hurt her. I want her to stay in contact with everyone back there, but am I reopening a fresh wound every time? This is something I will need to talk to Child Life or the Social Worker about.

Tomorrow we don’t have to be over there till 12:20pm… but she still has to be NPO because of having a CT Scan. Once we prove to them we can do it without sedation, I think that misery will stop.

By 5pm CT, we will potentially be inpatient though I still haven’t been told if she’ll be accepted to the study. We’ll find that out tomorrow too. I am crossing my fingers, but not holding my breath until they say we are definitely in. I really hope we get in. Jesse, however, doesn’t want to go back… and just wants to go home. I wish I could get her to understand we have to take this shot. We have to try to buy more time.

Thursday, December 12, 2013

We meet with Jesse’s oncologist at CHKD. The news is not good. Jesse’s neuroblastoma has reoccurred.  Our doctor gave us three choices:

• Do chemo at CHKD
• Undergo MIBG therapy: Here they take the MIBG radioactive isotope, make it more radioactive, inject in Jesse’s body, and she has to sit in a lead lined room for 3 days by herself. (my opinion this would only happen if they kept her sedated during that time because she would have high anxiety, but if we had to do it, we will do it.)
• Go to St Jude to see if Jesse can participate in a clinical trial of humanized antibody, chemo, natural killer cell therapy

Since the oncologist came in with the paper for the study already printed and told us this was the most aggressive thing we could do, Mike and I felt we should give it a try.

With the decision made to give it a shot, he got everything together about her cancer history and sent it off.

Friday, December 13, 2013

At 1:30pm, the call came from a very nice man that we would be seen in St. Jude’s D clinic on Monday. Mike and I got everything ready for Jesse and I to leave Saturday morning.

Saturday, December 14, 2013

We left at 7:15am from our house heading to Shelby, NC where my aunt and uncle lives. My mom rode with us. We arrived around 3:30pm. Jesse had a great time playing with cousins.

Sunday, December 15, 2013

Around 2am, she began screaming of the pain in her leg and back. We gave her some pain medicine, and tried to go back to sleep.

By 7:54am, we were on the road to Memphis. It was a long drive for Jesse, and not one I think I can make her do again if she is excepted into their study and chemo is started.

We arrived in Memphis around 6pm EST, but being on Central Time now it was 5pm. We grabbed some snacks from Kroger, then headed to St. Jude to register. We got lost, but figured out how to get going the right way after stopping at a shady looking place in Memphis.

We registered with the registration. Then Jesse was taken to the Medicine Room to evaluate her. She was really edgy and in pain, and her blood pressure reflected that. After clearing her for housing, we came over to the Memphis Grizzlies House on campus.

This place is impressive. They have allowed us to stay in a room with a living room and separate bedroom. You can do laundry for free, and they have a continental breakfast in the morning. We basically unpacked, order a pizza, and went to bed.

Monday, December 16, 2013

When I looked out the window in my first daylight in Memphis, I see a huge pyramid. Wonder if we could see the Mississippi River if that thing (which the shuttle driver said was going to be a Bass Pro) wasn’t in the way.

We headed over to the main hospital at 7:45am. We were registered, and then a nurse came to show us around the hospital.

First we went to patient services to make sure our hotel stay time and meal cards were correct. Then she went to have her picture taken. She was such a sourpuss for it. I don’t blame her, I was getting overwhelmed at that point too.

Then we went to D-clinic for assessment and to met our nurses and doctors there. Kind of wish I could have put Jesse’s nurse from clinic in our suitcase and brought her along.

They asked questions, looked at Jesse, talked about placing her CVL. I’ll be honest, I am far from happy to see that thing again.

They also prescribed morphine for her leg pain, zofran, miralax, SSKI drops (not a fan of how the pharmacist wants me to give her those), and a new medicine to help her not strain.

Then we went to triage to have a line placed in her arm. Many people came into try to help, and I am not sure if that added to Jesse’ trepidation too… She did amazing job of holding still. Hopefully it will last through till tomorrow.

Afterwards we were able to get lunch. As I walked away to get us some ketchup… Jesse spilled her entire drink all over her front. There she is scream crying in the middle of St. Jude’s. While I looked for someone to clean up the mess, Mom came back to our room to get Jesse a change of clothes.

At this time, I’d had it with her attitude all morning. I know it’s wrong, and she is miserable… but I had reached my limit. I think I upset her more by calmly telling her that I had had enough of the attitude. When the doctors and nurse talk to her, I told her she need to respond back. They are there to help.

From lunch, we went to C-clinic for consultation on the line placement, meeting with anesthesia, and c-clinic child life. We talked with her about getting Jesse to do the MIBG without sedation.

We tried to go to patient orientation, but the lady had to reschedule. Part of me is okay with that… the other a little frustrated because is something else that will be added to the schedule later.

Afterwards, we dropped a sleeping, overwhelmed Jesse with Mom in a lobby. Then we went to get her medicines from the pharmacy, saline to flush her line, and her schedule for tomorrow.

Then we got Jesse to triage for 2 more labs from her line.

I am exhausted, overwhelmed, frustrated (and tired of having a hard time finding food that is gluten free so I am not itching because I have huge bumps all over because of eating gluten… found that out in July).

I also have noticed that married families must be something this place hardly sees… every questions about Mike began with “Do you have custody papers?”

I’ll stop. I’m grumpy. And everyone has been very nice, just really busy, and in a hurry. And once we get the routine down this won’t be so painful and overwhelming.

Tomorrow, we have ECHO/ EKG, then CVL placement.

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.