Week before last Jesse asked me about what upstairs at Hershey Medical looked like. Saturday night (December 13) we got the opportunity to find out.

We started the day with plans to go to Hershey Chocolate Factory and spend time together as a family. First we went to check out the Thousand Trails 15 minutes from Hershey in case we get the chance to come camp this summer. Jesse fell asleep on the ride there.

We did make it to Chocolate World. What a zoo. We made Jesse wear a mask the entire time. Afterwards we went to Red Robin, then to Target. Jesse was having a really hard time staying awake going to Target.

When we returned to the room at 4:30pm, we called the doctor because her tiredness and cough made us nervous. Because she didn’t have a fever, we decided to try giving her back her Singular. I gave her the Singular… and 15 minutes later she threw up.

By 6:30pm, Jesse was running a fever of 99.3. We decided to take her temperature an hour later: 102.4. After calling the doctor, we were on our way to the emergency room at Hershey Medical. This is the first time that Christine has gone the entire process of an emergency room visit.

Chris opted to go with Jesse and I while Mike parked. It took 15 minutes to get checked in because the computer system was down. Afterwards they took us to triage. From triage back to a room to access Jesse’s port. Luckily I had put LMX cream to numb her skin before we left. Turns out that stuff is good for between 2 and 4 hours… who knew!

As I was talking to the resident, the nurses started to access her port. They had asked me her allergies before they started, but I heard the cloroprep pop and they hit her skin with it. I got them to wipe it off, praying it would not send her into blisters. They were very apologetic. (Unfortunately it did cause a place on her that made taking the tape off painful when the de-accessed her on Wednesday.)

They took blood to check her counts and make sure she didn’t have an infection in her line. Then we had to wait for the results. Once we reached the waiting point, Christine started having a really hard time. She kept saying that she wanted to go home. By 11pm, Mike took Chris back to RMH. Around 11:52pm, we were finely upstairs in a room.

We were amazed by the room. I asked the nurse where the parent’s room was. She looked at me like I had a third eye. Turns out here I can sleep with Jesse if she wants. I can use the bathroom and shower in the same room Jesse is staying in.

The nurse swabbed Jesse’s nose for MRSA and RSV. They swab for MRSA every 7 days here.

I asked the nurse if I could get the stuff for a sterile urine sample. I was petrified that Jesse was trying to pop another UTI. The nurse was awesome to bring me what I had asked for and to send it off for analysis.

Jesse woke for awhile, and we watched a movie. When we woke on Sunday morning, the site out the window was mind blowing… hills, forest, and grass. When Mike and Christine arrived, I went with Christine back to RMH to clean the room. I had a fear from being at the Memphis RMH that we’d be kicked out.

We cleaned the room, found a manager to talk to, and found out that we would have to leave. The reason was because Mike and Christine were going home that day and I wasn’t going to leave Jesse at the hospital by herself.

When I returned, Mike and Chris headed for home. Given the circumstances, it was hard to watch them go. Mike was really hoping to see a deer from the window. (The nurse told him deer are seen quite often.)

In the afternoon, we learned that Jesse’s RSV test returned positive. To help her get over the RSV maybe faster, the doctors decided to give her IVIG on Monday. As hard as we had tried, Jesse still picked up a cold from I think someone being here at RMH. So frustrating because this puts her in isolation until she stops coughing, which can be 3 to 4 weeks. I keep telling myself this is better than the months we were in isolation at St Jude.

I will give huge props to the staff at Hershey Medical. I NEVER once heard anyone complain about putting on a mask or the gown. And everyone was really great about wearing it because the last thing we want to do is give this to anyone else. I can’t begin to tell you how much we appreciate the way we have been treated here. Never once have we felt like an inconvenience. Mike even commented driving around town how courteous people are here.

On Monday, the blood cultures had grown for over 24 hours and so had the urine culture. Both were showing negative results. The doctors explained that Jesse’s RSV was all upper. And at that time they didn’t think there were any other infections. Yeah!

The IVIG started at 9am. The plan was to start infusing at 10mls and eventually work up to 70ml rate of infusion.

But at 30ml rate of infusion, Jesse started to shiver violently. The nurse stopped the infusion. And after several discussions with the doctors, it was decided that Jesse could not handle the IVIG protein above a 20 ml/ hour rate.

The nurse apologized because it would take so long, but we weren’t upset because we weren’t going anywhere.

The infusion finished around 5pm without other incidents. Jesse kept begging for people to play with. Our nurse was awesome to offer to come back and play with her. He asked if she liked to play board games. She responded with she wanted to play dolls, which he agreed to do. But he got lucky because when he returned Jesse was into a show on TV.

Monday night Jesse didn’t run a fever, but her blood pressure started to be a little bit higher. I asked her if she hurt, and she told me she didn’t.

Even though she didn’t run a fever, the doctors decided they wanted to check her for C-diff just in case. I have no problem with that. I would rather catch it earlier than later. And since her counts on Tuesday were 260, I definitely don’t want to take chances. (Luckily the results came back with no C-Diff).

The doctors decided to give her Synergist, an RSV vaccination. But they did it through her IV line instead of being a shot. So I am not sure how long it will be effective in protecting her from RSV, or if it was just a one time deal. They also decided to hold her Serafinib (Nexavar) until she has the next dose of gemcitabine and oxalyplatin on Monday.

Her blood pressure increased to 150 over 97 by Tuesday night. This coupled with a headache caused me anxiety. After much discussion, the doctors felt the headache was from the IVIG. And luckily her blood pressure started to return to normal on its own.

Wednesday morning her ANC jumped to 1680. I have never seen her do that without cheating. And by cheating, I mean me giving her a shot of GCSF or GMCSF. Since she was doing well, the decision was made to discharge her.

From our experience with the Memphis RMH, I was concerned about where we were going. Jesse will stay on isolation until she stops coughing. And we definitely don’t want to infect someone else at RMH with this. Turns out here, RMH will allow you to come back. Jesse just has to stay mainly in her room and wear a mask when she is in the common areas. And thanks to our social worker, she can eat in the room. This way we don’t risk picking up something else. Yeah!

Our social worker was busy getting our prescription of GCSF (yes she will start shots again on Tuesday) that he accidentally forgot to tell us we needed to register with RMH. But RMH called us to see if we were coming back. I’m not upset at all because he was having to figure out a lot with getting the prescription to our house, and I really appreciate him doing that.

Back at RMH, we have been hanging out in the room. Thursday night I took her to see the Hershey Sweet Lights. Jesse really enjoyed herself and we picked the perfect time to go.

Friday, we traveled to clinic for Jesse’s counts to be checked.

What is really cool is all her blood counts look to be returning on their own. Yeah! We are praying that she has 50 platelets (the number they would like for her to be at when chemo begins again on Monday). I also learned that IVIG can cause high blood pressure. This is only our second experience with IVIG.

On Sunday, Jesse saw some people donating to RMH from her window. She asked if she could wave to them. She was so excited when the little girl waved back. The family asked if they could meet Jesse. The young man in charge had gathered the donations to RMH as part of his senior class project. And they were really nice to give Jesse a stuffed dog. She has named and renamed her.

Today was luckily more of the same. Jesse mentioned that her stomach hurt about 1pm. I gave her an Ativan, and she was good to annoy me. At least she  well enough to drive me crazy.

I saw the family from last night. I apologized to them if Jesse caused trouble. Turns out the little girl was on the PET Scan diet and crashing.  Assumption makes a punk out of me. Got to stop making that mistake. I am so worried about behavior and not being like the girl whose kid kept telling Jesse to stop making that noise when Jesse was puking that I misread people.  Jesse was so excited to play with her tonight. Please keep her and her family in your prayers.

After they left Jesse played with another family in the playroom for awhile. They have a little one about 2 years old. She kept taking toys from Jesse, and at one time I did have to call Jesse out of the room to explain their age difference.

Now she is waiting for her dad and sister to arrive. So far poor Mike has toured some of McClean, VA and Fredrick, MD. I really hope that he can make it into Harrisburg without getting lost and then into Hershey without getting lost. I’m normally the navigator, and from the sounds of the phone call I got from him, Google Maps just doesn’t cut it for him.

 

Tomorrow Jesse would have gone to the Nutcracker. She was really excited to go because Chris went last year. I haven’t reminded her because I don’t want to make her upset.

The last two days have been pretty boring, luckily. And we are both suffering some major homesickness. You’d think that having spent almost 8 months out of 2014 in another state from Virginia, we’d be used to it.

Yesterday, Jesse got sick once, but was awake until 9pm. The night before even with Ativan on board she was awake until 10. She slept through the marathon runners from upstairs (who were up at 4:45am).

Today she got sick once before the blind repairman came. Not sure if I am a fan of cordless blinds. The repairman was really nice. He was uncomfortable in that “I feel really sorry for you kind of way.” Right now we have temporary blinds. I think I like those better because they will let more of the morning light in. I need light! Plus it was snowing outside today and that was pretty to watch from under Jesse’s guitar I placed to hold the blinds up.

She did eat dinner tonight. Then a little girl she met while here last time arrived.  The little girl did ask about Jesse’s mask. I make her wear it because the chemo is lowering her counts. Better safe than sorry.

Jesse really perked up when this girl arrived. She misses having kids her age to play with. Her sister’s arrival tomorrow will probably perk her up. I think the Ativan helped her from noticing that the girl’s parents would not allow her to come back in the playroom. (Update: got a chance to talk with the mom tonight and apologized if Jesse was causing trouble. More about that in next post.)  And I was able to get her back to the room before it started to dawn on her.

Right now she has taken the paper from a present someone made and cut it up… I need to vacuum anyway. Today she has complained about her hands tingling (a side effect of the oxaliplatin), but no mention of her side hurting.

I excel at being behind in posting. My last post was a total rant against RMH… and probably not polite to share.

After giving us a ton of grief about not having a room if we went home, Ronald McDonald had a room for us. I was so glad to get out of here last week, which is really a bummer because I really like the staff at Hershey Medical Center. Too bad teleportation doesn’t exist. We could pop in for treatment and be home for dinner. Same with going to CHKD.

We arrived at clinic yesterday morning. The research nurse was really nice to spend the day with us considering she probably had a ton of stuff to do. And the doctor who is heading the study at Hershey was really nice to check in on us from her conference in California. I am amazed at how on top of things they are here. They have communicated with CHKD about Jesse’s treatment. And they are trying to work with us to get us home. The only sad draw back is lack of a teleportation unit. 🙂 If you every have the chance to come to this hospital, I would recommend it.

Jesse received her first dose of the chemos the DNA testing statistically showed would be most effect towards her tumor aout 1pm. Two of the drugs are IV infusions taking place on Day 1 and Day 14 of her treatment. They are gemcitabine and oxaliplatin. The gemcitabine runs over 30 minutes. Oxaliplatin takes 2 hours to infuse. Both are going to throw her counts in the toilet, meaning that I am making her wear a mask. Plus she might (more than likely) will loose her hair.

Another crazy side effect of the chemos is a tingling sensation in her peripheral nerves. This become more pronounced with exposure to cold. In fact, we were asked not to let her have cold drinks before or during chemo because you have these types of nerves in your neck. Other patients have been observed to have a sensation of not being able to breathe after drinking something cold while getting oxaliplatin.

And of course, nausea is an ever present side effect that hit pretty hard until I talked her into having some ativan. But we have to try this because the PET Scan taken on December 3rd shows a slight increase in size of the active tumor near her right hip since the scan done in late October.

The other drugs she is taking are sorafenib and turmeric. Both are taken twice a day, every day of the 28 day cycle. I am not seeing a great deal of trouble for Jesse with these 2 as quickly as I saw her get sick from the IV chemos.

She is complaining today that her right side near the tumor hurts, different spots on her legs hurt, and at one point her back hurt. But she has been drinking on her own and did eat a little this morning. I think she would have eaten more if the smell of what was being cooked in the kitchen hadn’t turned her stomach.

That is the hard part with staying at RMH. One not sure who is here with what and where they have been, and what they plan to cook for dinner and how the smell will affect Jesse. And we are not allowed to eat in our room because of potential for bugs/ past messy people. I overheard some ladies complaining the in kitchen about having to bake here. The comments were it would make since to bake at home where they could do laundry at the same time. These people are volunteers. I beat a retreat out of the room before I excelled at my favorite past time of open mouth insert foot.

Our next appointment is December 15 for her counts to be checked. We have been asked to stay nearby in case Jesse has an emergency. While there has been a study of gemcitabine and oxaliplatin on kids at St Jude, I have been told this is the first time these 4 have been used.

If everything goes well, we will be able to maybe do the infusions here and then return home with count checks at CHKD.

Disclaimer: While we hope this combination will stop the tumor and free us from having to be away from home for long periods of time, this is experimental. And the turmeric being used isn’t stuff you would buy in a health food store because those manufacturers aren’t FDA regulated. Luckily they have a Naturalistic doctor they can consult with.

Jesse woke with a start and a scream at 6:30am. She often has nightmares, but halfway through the scream she stopped. She then told me she dream she didn’t have to have the bone marrow biopsy (which was scheduled for that day), and she went home.

At the time, I told her we’d be home by Friday, and they would give her numbing cream for the bone marrow biopsy.

At 8, we headed down to catch the shuttle. A gentlemen was waiting too. He was in the shuttle when we rode over Monday morning. We chatted while waiting. He is the father of 9 kids! The youngest was born with his stomach, esophagus, and heart in the wrong places. He had a surgery at Hershey and is currently recovering in the NICU.

At clinic, the doctor and research coordinator saw us really quickly. The doctor showed us the PET Scan results. Jesse still has active disease, therefore making her ineligible for DFMO right now. I think we knew that something was possibly still there. So I honestly I am not shocked.

The spot I think, but am not 100% sure, is in the location of the 5cm spot from last year this time. Currently it is 2.6 x 1.9cm.

As she was showing us the scans, the doctor told us about a study that Jesse can participate in. One that actually is being run by the same doctor for the DFMO study.

The study takes a biopsy of the active tumor via CT guided needle. Then they send it to Arizona for 2 weeks of DNA testing. This DNA is then put through a computer system looking at what drugs the tumor is susceptible to. They gave me a list of possible drugs. Ibuprofen is on the list of potential drugs she could take to try and make the active tumor inactive. It might not be one chosen for her, but as a parent who has heard for the last four years to not give her Ibuprofen because of her CVL and now port… it is mind blowing. It makes sense when you think about it because of being an anti-inflammatory agent.

Once the DNA sequencing is complete, a board of doctors from all over the world will meet to plan the best treatment for Jesse. They will pick 3 to 4 medicines. Then the plan will be sent to a reviewer to double check.

Since Jesse has active disease and we were not continuing the DFMO pre-study, the bone marrow biopsy was cancelled. They also cancelled the MIBG scans because she is not MIBG positive (meaning the tumor doesn’t light up on the scan). The CT Scan for Thursday was moved to 10:15am.

The research coordinator walked with us to CT scan. She had paged the head doctor of the Molecular Study for Penn State before we headed down. This lady also is the head at Hershey for the DFMO study. Our plan had been to meet her Friday. I am really impressed that she stopped what she was doing to meet us so quickly.

While we waited in the CT waiting room for her to arrive and the CT Scan staff to be ready, the fire alarms went off. The plan for the CT scan area was to stay put, and within a few minutes the fire alarms stopped.

A few minutes later, the study head doctor arrived. I really like her too. Very friendly. She was laughing about the time a fire alarm sounded while she was in the cafeteria. The doors in the cafeteria slam shut like a garage door when the alarm sounds. She witnessed an employee hear the alarm, see the doors start moving down, and successfully complete a baseball slide under the door.

She was telling us this story as Jesse and I were leaving the CT Scan. This was the first CT Scan were Jesse rode backwards through the machine. She had no trouble with it. In fact, she thought it was cool to ride backwards 🙂

We returned to clinic with the doctor and research coordinator. They began to figure out when to have the consent signed. I mentioned signing it then. I had had time to read the consent and talk to Mike. For us, getting this information makes sense.

We signed the consent. And the coordinator told me she would contact us with a time for the biopsy. They were hoping to get her in for Thursday. They also planned to contact St Jude about her bone marrow. If no disease showed in her bone marrow, they wouldn’t have to biopsy it. But I would not be surprised if we don’t have to do that.

Jesse and I headed out the door about noon to Red Robin (they have a gluten free menu!!!). Afterwards we decided to check out the campgrounds in the area. We found the Thousand Trails one near Palmyra, which isn’t far from the hospital.

After looking at the campground, Jesse asked to go to Hershey. She had seen the roller coaster near Red Robin. But because of the time of year, The Chocolate World was the only section open. Jesse really enjoyed the “tour” through the factory, especially the signing cows. Afterwards we checked out the store, and yes… we were bad.

As we were looking around, the coordinator called me because the biopsy couldn’t be scheduled until Tuesday, November 4. And they felt keeping Jesse in Hershey till then wouldn’t be fair to her. She suggested having Jesse de-accessed and going home. I really appreciate how they work to help their patients be home as much as possible. It means a great deal.

After cleaning the room at RMH, Jesse and I were on the road. I did make the mistake of ending up on the 495 Beltway at 7pm… Never again. Never. Hands down Northern Virginia wins the worst traffic award. And Jesse kept asking to stop at a McDonald’s. We did stop at the one in Stafford.

We will head back to Hershey on November 3rd. Once the biopsy is taken on November 4th (4 years to the day of her original biopsy), we’ll return home while the sequencing occurs. This can take 2 weeks.

While it bites that Jesse has active disease, we are looking at this positively. It is not affecting her quality of life right now. This will give us a chance to get ahead of it maybe. It might come back that nothing works against the active disease. If this is the case, it’s not the last option we have. We can continue irinotecan and vincristine at CHKD or maybe travel to Michigan to meet with the head head doctor of the DFMO study and the Molecular Study at Helen D. Voss Hospital.

 

Yes I know totally delinquent in posting. I honestly had a little breakdown. We got home and save for going to clinic, we got to pretend that Jesse was like everyone else.

The last scans from St Jude show the light has stopped appearing on the MIBG. As the doctor put it, “This doesn’t mean there is no active disease… you will need to either do chemo or find another clinic trial. But we have nothing else for you at St Jude.”

And with that, we came home. Jesse started school with her sister and friends. She is so happy to be in the classroom with everyone.

I began talking with our home oncologist about what we can do. I have asked about the DFMO study before. He was nice to send the information he has on Jesse to Penn State Hospital at Hershey, where kids are being enrolled right now. However on the first send, we couldn’t go because Jesse had been off of chemo too long.

Our oncologist gave her a low dose of irinatecan and 1 dose of vincristine to get back within 30 days of having chemo. Jesse completed the treatment on September 27, 2014. She had no remarkable side effects.

He sent the scans again, and we waited to hear if we could come for scans to see if Jesse qualified for the study. And in the beginning of October, we were contacted by Penn State.

Before heading to Penn State, we headed to Shenandoah Valley Campground. We had 7 kids with us (must have lost our minds), 4 adults, 2 dogs, and 2 campers. Two nights all the kids and dogs ended up in our camper. Making memories, making memories 🙂

The kids (and I did too) had a blast trick or treating, dancing, and hanging out. Jesse did have a harder time. On Friday she had to start a diet where she could only have 20g of carbs for 3 days. The reason was because of a PET Scan scheduled for Monday. The scan will show if there is active disease by taking in the radioactive sugar used in the scan.

Basically the diet is the equivalent of the Atkins diet. The only fruit she could have were 5 to 10 strawberries a day. And by Saturday, Jesse was starting to feel the effect of no carbs. I think the person that saved her from being really down for the day was Emily Hubbel.

Emily has been fighting neuroblastoma for almost 4 years straight. Her family ended up camping across from us, and the girls really hit it off. For Jesse, having another little girl fighting the same thing to talk to has been huge.

Jesse and I arrived at the Ronald McDonald House in Hershey yesterday at 2pm. We left our friends at almost 10am in Verona, VA. The drive was wonderful, but hey anything less than 13 hours, makes me happy 😉

Jesse was feeling pretty punk when we arrived, and in fact she slept for the last part of the trip. I was really surprised at the lack of gate around the facility. Plus it feels much more open and friendly. There are no assigned kitchens, tons of volunteers are in and out, and good grief the food that pours into this place.

The volunteer who checked us in was interesting. Another couple leaving who didn’t speak English as a first language were trying to ask her a question. When they didn’t understand the words she was using, she would talk louder instead of finding another word to use.

Once I had our belongs upstairs, Jesse and I ventured to Karns for some food she could eat. But when I gave her a slice of cheese, it came back up. While she was puking, a little boy kept coming over to her telling her to stop making that noise. His mother or whatever just kept looking at her phone. From the bracelets on her arm, I think she has a baby in the NICU.

After dinner, we retreated to our room. Jesse was out by 7:30. Her falling asleep early always scares us. But in a way it helped. She was really sad not to be with her sister and dad last night. And I couldn’t get her to understand that we will only be here till Friday late morning.

I had her up at 6:30am to catch the shuttle to Penn State. We were downstairs at 6:40am even though shuttle doesn’t run until 7:10am. But there was one right outside the door. Jesse and I hopped in for the quick ride over.

At 7:45am, clinic was open. After registering, Jesse and I sat down to wait for the nurse. Suddenly she looked at me said she was sick and threw up. I didn’t even have time to react. And as she was getting sick, she kept apologizing. And I kept telling her it was okay.

The nurses and clinic staff were super sweet. They found Jesse some clothes to wear. Then we met with the research coordinator. Super nice, very knowledgeable, and just a great person. We had to wait for the doctor to come for the consent. With Jesse getting sick and waiting on the doctor, the PET Scan time was pushed back an hour.

Once we signed consent, Jesse’s port was accessed. All the kid said was “ow.” I did learn something very interesting. The bio patch that Jesse had around her CVL in 2010 through 2012 is full of cloroprep. If I had an idea… I totally forgot. Jesse breaks out in blisters if cloroprep is used on her skin.

When the blood was drawn, the coordinator walked with us to Nuke Med. The Nuke Med here is in the adult hospital. About 10:30, the radioactive sugar was injected into her line. The scan was started at 11:55am. First they did a CT scan, then I was allowed in the room with her.

For the 25 minute scan, Jesse was asleep. And I had a hard time waking her up. When the technician entered the room she kept saying Jesse’s glucose was low, and she needed to eat.

Since I figured she wouldn’t tell me the numbers, I returned to clinic to ask for a print out. Instead the doctor took the time to met with me again to go over them. Really impressed by that. Jesse’s glucose was 35!!! They really prefer for it to be 70. And it explains why she got sick twice and fell asleep so easily.

By the time we saw the doctor a second time, Jesse had had sugar and had perked way up. Actually becoming quite talkative. The doctor also promised to have her out of Hershey by 11 or 11:30am on Friday to make it home for trick or treating. Really hoping that happens. Really praying that she doesn’t get sick or run a fever. Fever could cause us to be admitted… and stuck.

For some reason the blood cells broke messing up testing the first time, so the doctor asked if we could get another sample. Jesse agreed, and she has really taken a liking to the nurse in clinic. Not sure if it was the nurse mentioning she lived in Ashland, VA for several years or the fact she gave Jesse pretzels… might be the pretzels.

Jesse and I walked back to RMH since it was less than a mile away. Plus it was a nice day. It amazes me how much green space they have at this campus.

Jesse and I snacked on food in the kitchen. And she has been talking about the pizza that is for dinner tonight. And she is worrying about how she is going to sleep since they have left her needle in her port. Tomorrow she has bone marrow. They will put her to sleep for that, but she is still worrying about it.