Jan 24, 2015

To recap where we have been. In October, we started traveling to Hershey Medical Center, which is about 4 to 5 hours from our home. Jesse was not eligible for the DFMO trail because she still has active disease. In November, they biopsed the disease. And we began a trial of 4 different drugs that were bio-statistically shown to maybe be effective against the active tumor.

During December we stayed in PA because they wanted to see how she did between the first two rounds of chemo. When we received the second on December 22, we headed home. And then we missed the next two rounds of the toxic chemo because her bone marrow is whooped. All the treatment has made it hard for her bone marrow to recover quickly.

We missed the scheduled dose of chemo on Monday because of this. But the doctors wanted to scan her anyway to see what has happened since the first round. And if her platelets and ANC were within the protocol range, then we’d also have chemo while in Hershey.

We arrived Monday by 2pm for her 3pm appointment. This gave us time to put on her LMX cream. The cream numbs the skin better if it can sit for an hour or more. And sometimes they really have to push to get the needle into the port.

By about 3:30pm, they were ready to put the needle in. Unfortunately the nurse doing it began talking down to me as if I had no clue. She’s never met me, and therefore had the impression that I was new to all of this. Her talking to me that way started to fluster me. She questioned what the port was. When I told her a smart port put in at St Jude, she asked why we came to Hershey versus staying at St Jude.

After getting her to agree to leave the needle in Jesse because of her CT scan on Tuesday and PET Scan on Wednesday, she inserted the needle. And the blood didn’t come back like normal. Fortunately after several flushes, it worked.

The lab was so busy on Monday that by 4:30, there were no results. The doctor decided to send us onto RMH instead of waiting.

Tuesday morning Jesse began the PET Scan diet. For some kids (and most adults) Hershey likes for the patient to only have 20 grams of carbs for 3 days prior to the scans, then 12 hours before the test only water. Jesse has shown she can’t do this; her glucose crashes too hard. So they have made concessions to allow her to do 20 grams of carbs the day before the PET Scan and 12 hours fast right before. This diet is still a butt-kicker for Jesse. By Wednesday morning she was throwing up.

At 11:15 on Tuesday, we went into the room for the CT Scan. Jesse was scanned within 5 minutes.

Wedenesday morning, we cleaned the room at RMH, got some of the ice off the car, and headed for Jesse’s PET Scan. At 8:15 the nurse injected her with the radioactive sugar. The sugar needs 90 minutes to get around her body.

The scan was completed about 10:30am. And I could let her carb load again. We grabbed some food from the cafeteria, and headed to clinic to wait for her chemo to be ready.

While the doctor didn’t have the official read on the scans, she showed me the PET Scans in the computer. And while we were looking the official read came in.

Since I had barely really seen the scans at St Jude, I missed that Jesse actually has 3 spots in her body of neuroblastoma. The original tumor wrapped arround her aorta and vena cava, a small spot in the muscle next to her right hip, and a cluster on the right side below her kidneys. This cluster is what I have mistook to be the one on her hip.

The CT Scan showed it as a lumpy bumpy mass. And measurements increased 0.1cm since the scans in November. This might be difference in who is measuring it or actual growth. The PET Scan is more startling. In October, the cluster is about the width of a pinky finger. In Novemeber, the width of maybe a pointer finger. The new scan, it looks like a miniature liver in shape. Plus there is questionable activity in the old original tumor.

This is a hard blow. We did go into this knowing that the drugs might work and might not work. And from the way that I keep hearing cumulative effect, I am wondering if she needs more of the drug to build in her system before it can deliver a punch? It’s hard because you’d love to see shrinkage. Plus we’d love to reach a point where Jesse is home a majority of the time and participating in activities like any other child.

The doctors wondered from the CT and PET scan if maybe there was extra activity due to immune cells fighting the cancer, but we have no way of know that unless we did a biopsy. And that is a lot to put her through. The positive is there are no new spots or lesions in her body.

I learned from the research nurse later in the day, the doctors planned to meet on Thursday to talk about Jesse, and we’d progress forward with chemo for now. The chemo will be at 50% or 75% dose due to how her bone marrow has responded.

Jesse finished her chemo about 3:30pm and received a dose of ativan. And once we had turned everything into RMH, we headed down the road for home through the snow. I am not staying at RMH once Jesse has had chemo any longer than I have to due to the inconsiderateness of  people coming in sick and smell of funky foods they want to cook (it makes Jesse gag). Between being at RMH and the PET Scan diet she lost almost 2.2 pounds and I lost 5 pounds.

I have noticed this round that Jesse is eating better and feeling better than the first two rounds. She has complained of her side hurting, but it has not slowed her down. The times before with this combination, she didn’t feel like eating on the second day. Overall if you were to meet her on the street, you’d think nothing was going on.

Tuesday we’ll visit clinic in Norfolk for blood counts. If her counts are elevated, I can stop giving her the GCSF shots. When I gave her the shot today, she actually bled, so Tuesday might be long due to getting platelets.

Note: the tumor is measuring 3.1cm in one direction. The comparison of sizes above are not actual measurements, just comparisons.

Posted in Uncategorized

December 13 – 21, 2014

 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.

Posted in Hershey

December 12, 2014

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.

 

Posted in Hershey

December 11, 2014

jessetissuepaperTomorrow 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.

Posted in Hershey

December 9, 2014

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.

Posted in Hershey

October 28, 2014

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.

Jesse in Chocolate World

Jesse in Chocolate World

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.

chocworld200After 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.

Riding through the factory tour.

Riding through the factory tour.

 

Posted in Hershey

October 27, 2014

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.

Posted in Hershey

July 12, 2014

I seem to be excelling at the weekly updates as of late, but we really have not had too much happening. We get up, go to St Jude, get radiation, and return… for the most part.

Monday, the line nurse came to see us early. She removed the gauze from Jesse’s port site. They were very pleased with how the site looked. Until Monday, I have to clean the incision site with betadine. As of Saturday, the steri-strips have not fallen off.

Tuesday, we did make a detour to Graceland. I figured we had better see it since we were here and St Jude patients and family get in free. Chris was fascinated with the tour, but she got stuck on Elvis dying at 42 of a heart attack. Jesse was fascinated with Priscilla’s wedding dress and photo of baby Lisa Marie. I got stuck on the smallness of the rooms and that he only paid $100k for the house and 13 acres.

The other big news from Tuesday was (drum roll please) Jesse was released from isolation!! We are no longer lower than dirt. Yeah. Jesse was really excited. I am enjoying that they can play in the play rooms while waiting for radiation.

Wednesday, we got to walk in the front door and go to registration. Without an escort, without having to call for a clinic to fetch us. We even got to wait in the radiation waiting room. Here Chris discovered tape art. She made 6 flags while we waited for Jesse’s appointment to finish. Jesse walked back with the technician like nothing was happening.

We went for lunch at Chili’s. As we were in the parking lot, Jesse suddenly screamed her stomach hurt. After handing her a bag and her hurling, she wanted to go eat.

Thursday, we started the day at Triage. They had to access Jesse’s port for the first time with her awake. She was beyond nervous. I talked her into singing different songs. Chris was a great help in getting Jesse to sing. I had also put LMX numbing cream on her port site almost 60 minutes before she was stuck. My plan had been 30 minutes, but they didn’t call us back right at 10 (which is what our appointment time was).

The nurse laid all the equipment out she would need. I never thought that accessing the port would have to be sterile. It makes sense, but I was thinking they would access her like they put a line in her arm. She gave us masks to wear, removed the lmx cream, and inserted the 3/4 needle. Jesse commented that it didn’t even hurt. And we all breathed a sigh of relief.

As for her weight, she is back to 15.8kg. No one said anything to us. She is eating, but we are more active.

Our next stop was radiation for her treatment. Shortly after our arrival, the nurse called us back. They were having the doctor see her before radiation treatment because they were behind on the machines.

There is a new fellow. I told him about her occasional vomiting (3 times total since we have started radiation). He turned it into every day when the doctor came in. Can I tell you how much I can’t stand residents and the radiation fellows? Just report the facts… don’t embellish them, especially with me in the room.

The doctors recommend that Jesse get zofran, which we have. They checked her skin, which looks great because of a cream they gave me to put on her skin.

We left them to wait for her radiation time. It was for 11… At 11:40am, our nurse from D clinic called to see if Jesse could come over to see the doctor there because he had a meeting at 2pm. I told her we were still waiting for radiation.

About 12pm, the radiation technician came out. It was then we learned, they were running an hour behind. She suggested we go get food, but I wanted to catch Jesse’s main oncologist before he left for his meeting.

D clinic saw Jesse in less than 30 minutes. We didn’t see the main oncologist, but we did have to see the nurse practitioner, who commented on how tan and healthy we all looked. Don’t think she is the outdoor type of person.

When we finished with her, Jesse’s nurse came to de-access her port. This hurt because the port is still new. To keep it from being pulled out, the nurse had to hold it in place. She told me several other patients have told her this feels like someone pushing on a serious bruise.

We returned to Radiation at 12:30pm. By 1pm, we had not seen anyone. And I think this is where I messed up. I should have had the receptionist call back at 12:30pm to let the technician know we were back.

Finally at 2:30pm, they took Jesse back. Chris made 9 flags during this time and painted flowers and an airplane.

Friday we only had radiation. And after waiting an hour, they were ready for Jesse. While we were waiting, the kids got a scolding from the child life specialist about the mess of the playroom and paint being everywhere. I had my girls pick up after themselves when we left on Thursday, but they might have left behind some of the paint.

It actually burned me a tad. These kids are caught waiting for radiation to be ready, they need something to do. Why don’t you have the place constantly staffed with volunteers if you don’t want to deal with a mess?

On the other hand, maybe this scolding will help me. I have been after the girls to clean up after themselves for years.

While we were waiting on our vehicle, 2 patients approached Jesse about giving her and her sister a blanket, a hat, and clip with hair. The design is by a girl who fought cancer over 7 years ago. She is at St Jude’s for her yearly scans. Jesse loves the clip on hair, and I do to. It is easy to care for. Thank you Hats and Hair From Kids Who Care (They have a group on Facebook if you would like to check them out).

We returned to the campground, and decided to go to the pool. When we arrived there were 3 boys in the pool. One of them obviously feels that he never gets enough attention. He kept trying to show me how he could swim, which he could not because he about drowned me sitting on dry land. (Another part of the story, I don’t have on my bathing suit… don’t feel that it is fair to swim until Jesse can. So he was attempting to drench my clothes). I told him that he was killing me. Never phased him at all, and his grown ups never bothered to call him away from me.

Another family came with some rambunctious boys. Two tried to start fighting right near Jesse. When I called them down the parents gave me the stink eye. Excuse me for trying to give my daughter a chance to enjoy something that your kids get to do without batting an eye. And she can only sit on the top step while your kids roam the pool.

This family had a baby with them. I had to call Chris away from them because I could see that “smother the baby with attention” look in her eye. Luckily a few minutes later the slides opened, and the pool cleared out except for a mom and her daughter.

The daughter was really nice to play with the girls. Turns out they have recently moved to Horn Lake, MS from Stanton, VA. We may try to meet up with them later. A few minutes later most of the kids returned and some new ones. I opted at that time to pull the girls because it was getting just too crazy.

We went to the bathrooms to grab a shower. In the shower stall I like to use because it has a bench Jesse can sit and wait on, someone had popped or gotten dog poop in the shower stall. Chris and I grabbed a quick shower in another stall.

Afterwards, we went to the office to let them know. It’s not the campground’s fault. They clean the showers daily and do a great job. The caliber of people that have arrived this weekend is making me want to lay really low.

My mom had sent us an Olive Garden gift card, which we decided to use. Afterwards we went to Books a Million, and the girls picked out a book each. A lady in there asked why Jesse’s hair was missing. We explained, and then she had to know our names. In her defense, she looked to be about 30, but stuck at the mental age of 4 or 5. I am very proud of how the girls treated her.

Today we are going to just hang around here. The heat the next few days is going to be really high. Only one more week. Then we pull out for home. I have a feeling this is going to be a long week for me. I am ready to be back at my house with separate rooms I can quarantine kids into when they interrupt me, talk to me while I am on the phone, fail to listen to me, or fight with one another.

Posted in Round Two

July 6, 2014

Yes I am easily distracted on getting posts up. Hard to write when Jesse is saying “I’m hungry” every 5 minutes. She takes 2 bites of things, then puts it down. Combine that with Chris’ whining about this and that, it gets hard to think. No worries, I will break her of that horrid habit. And if not she will spend a lot of time alone in her room.

Tuesday, Jesse started radiation. That has been progressing really well. I don’t walk back with her to the radiation room because I don’t want to be an obstacle in her completing the treatment without sedation.

The treatments take 20 minutes. On Wednesday, we left afterwards. It was a little frustrating though. We arrived at 1:45pm because Jesse’s appointment was for 2pm. On arrival, they ask if we can leave and return at 3pm. No we can’t. I understand there might have been issue, but I find it very rude to be inconsiderate of my time.

Around 3:30pm, I went out to ask if we’d been forgotten. I was told 10 minutes more. When the ladies came to get Jesse for the treatment, I stressed to them on Thursday they could not be late because she has surgery. They told me to be at St Jude by 8am.

And on Thursday, we were. They did take her back at 8:20. Her table time was 8:30am, so I am not upset about this. Chris asked me for food once Jesse left the room, but I told her Jesse would not be gone long enough to go get something.

After the treatment our schedule had us bouncing to see D clinic, then returning to Radiation. Of course being in isolation, this bouncing just causes us to have to listen to employees complain about gowning up and walking to another area.

Isolation wouldn’t be that bad if employees didn’t make you feel like you were the biggest inconvenience on the planet. Sorry she has super bacterias that were created by the antibiotics given to help her the first time.

I talked with the radiation clinician. She was able to get the radiation doctors to see us before we moved. The radiation oncologist is a nice guy. Has to hug me every time he sees me… not really sure why.

The meeting was short. And the nurse told me about a cream she has ordered to help Jesse’s skin from getting too dry or burned from the radiation.

In D clinic, they were actually rolling. Our regular nurse was back from her vacation. She grabbed Jesse’s last blood draw from her CVL. We turned in the sterile urine sample. I had already given them the sterile stool sample. Really hoping that someone will let this child out of isolation for maybe the last week and a half we have to be in Memphis. (We have 12 days until Mike joins us… and since we gave them the sample on the day before July 4th… testing probably won’t be complete until Thursday of this week.)

The nurse practitioner came in next. And true to normal form she had no clue what was happening in Jesse’s treatment. I have determined that she is good for ordering medicines, and that is it.

The main oncologist actually came in on time. He assessed her and left. I wonder if Jesse had been a huge cure success, how he would treat us.

Then we had to wait 2.5 hours for surgery to be ready to take us. And once at surgery, we had to wait another hour. I do appreciate Apple inventing the iPad.

When Jesse went back to surgery, I took Chris to get something to eat. Amazingly she was far more patient than I thought she would be. The nurse from the OR called to let me know when they started and ended. I really appreciate that. He also let me know that everything went really well.

Chris and I had to wait about 30 minutes before we could go to the PACU once the surgery ended. While we waited the line nurse came to see us. I think she is the supervisor because she had been involved when I raised the ruckus over wanting sterile tape changes for Jesse.

She told me that Jesse can shower after 10 days. But she can not submerge the port for 21 days. They want time for it to heal because if it gets infected they will have to remove the port. I don’t want that to happen to her. As long as she can swim when we get to Chincoteague, I will be happy.

The insertion of the port was basically the surgeon inserting it into her jugular or sub-clavical veins. Then they run it with a wire to her superior vena cava, a blood vessel near the heart. The port is stitched under the skin leaving a small bump. The line nurse told me some patient refuse to move their arms and complain of pain afterwards. Jesse did complain of pain, but she hasn’t stopped moving the arm at all. I have had get after her to not pull, push, or lift things right now.

Jesse wasn’t fully awake, so I took the opportunity to run to pharmacy and take home supplies to grab the things she needed. When she did wake, we got a chance to see the new site. It looks to me like they just yanked the CVL out. She has a red dot in her chest where it once was. I am so glad she was asleep for that.

The port is inserted on her right side, and higher than I thought it would be. It is actually almost at her shoulder. I wish now I had asked if they used her jugular vein or her sub-clavical. It is covered with a white gauze bandage. We will get to see it tomorrow. And once we see it, I will need to clean the site with betadine for 7 days morning and night.

By 3pm, we were out the door.

ChrisJessetiedyecropFriday, we hung around the campground. They had a shirt tie dying activity and a parade. The girls shirts turned out awesome. Then we tried to watch fireworks from our camper. We did see some, but Jesse had reached the “I’m done, and because I am done, you are done whether you want to be or not” point. Can I tell you how much I love that point?

Saturday, we ran to the store to get some things to make for the potluck dinner. Brown rice noodles work really well in Mike’s pasta salad. Chris had some drama with a girl here in the campground. There are a few girls that are 8 years old. They have walkie talkies and basically run the campground with no supervision. And one of them is on a power trip, and Chris got whiny over singing karaoke with them. And now I am sure she has successful caught herself in the girl’s cross-hairs.

After the karaoke, they had a neon pool party. Chris tried to talk to one of their other friends, and I think has further inflamed the situation. I told her she need to have said okay, and not cried about it when they said she couldn’t sing with them. Sometimes it is just best to walk away instead of trying harder to insert yourself. Those girls are a cliche and one of them along with her brother have proven to be brats. 12 more days till Mike is here…

I’ll give Jesse credit, she could tell Chris was upset. And tried to stick close to her for the rest of the evening. Jesse had wanted to sit on the edge of the pool for the neon pool party, but there were way to many kids in the pool to be able to keep her safe. Jesse did cry about it being not fair, but I explained we can’t let the bandage get wet. After about 3 minutes, she asked to play with my phone.

A family from Va Beach is camping next to us for the week. They have 3 little kids, who just stare at Jesse. With her hair gone, it happens all the time. They are just curious, and Jesse just tells anyone who stares she has cancer.

About 9:30pm, we finally got to bed. Jesse woke me at 4:31 and 6am puking. She never complained about her stomach hurting, and this morning she is eating and playing as normal. And there is no fever. I am a little puzzled by this, and will ask them on Monday morning.

We have to be at St Jude for treatment at 8am. Then see the line nurse at 2pm. That isn’t convenient for me, so I am going to see what I can get switched on Monday. I had asked for afternoon radiation, but I guess since I was concerned about being late on Wednesday, they decided to make Jesse the first one. Works for me, less time there the better 🙂

Thank you Aunt Carolyn and Uncle Jerry for the gift card to Jason’s Deli. We’ll be having lunch in town one day this week 🙂

Posted in Round Two

July 1, 2014

On Sunday, over 6 inches of rain fell in Memphis. Luckily in our area there was no flooding, but other areas were not so fortunate.

Monday, the repairman came to look at the fridge. He thinks the fan is blown, and asked me to listen for it to cut on during the day. The temperature reached 96, but no sound from the fan. I called him back and he will return on Wednesday to see if he can fix it.

He is an interesting character. He is very knowledgeable about RVs. But I get a sense that he doesn’t suffer fools lightly. I witnessed him on the phone with a client, and I think he would have cussed had the girls not been present. And I am really sure that he had some choice comments about me when he left, although to my face he was “happy to help.”

Tuesday morning, Jesse was up bright and early. She is so excited to get her port. I had this sense that it would not happen today. And when they reacted surprised to see us in clinic, I was further convenienced Jesse was not getting the port today. But, hey, we were ready if they did do it.

I tried to see Jesse’s schedule online, but it kept throwing me errors. The nurse came in to draw Jesse labs. She told me the stool and urine sample we had turned in last Thursday have returned negative. If (really big and huge if) the stool and urine same returns as negative from this Thursdays sample, Jesse might get out of isolation.

The anesthesia nurse came to see us next about the procedure on Thursday. It turns out Jesse will get her port that day at 12pm CDT. After she left, we saw the nurse practitioner for surgery. She explained how they would put the port in. She also ordered an ultrasound of Jesse’s jugular veins and sub-clavicle veins to make sure they could be used. The ultrasound was for 1pm.

Since we didn’t need to see anyone else until 1pm, Chris, Jesse, and I headed out of St Jude’s. I was sitting in the truck in the parking lot trying to decide if I was going to return to Horn Lake or finding something in Memphis to do. As I put the truck in drive my phone rang. Ultrasound was calling to see if we were still there because they could scan her then.

We returned to isolation. This is where isolation is a huge pain in the butt…we called D clinic. The person who answered the phone said she would notify the clinician. Ten minutes passed… I’ll admit I was starting to freak a tad. The isolation nurse walked through the door a few seconds later. She was surprised to see us. I explained what was going on.

She walked us down to ultrasound… Jesse and Chris actually ran us the entire way, laughing as they ran. The ultrasound showed her veins are looking great. The plan is currently to try and use the same spot for her port.

In 10 minutes, the ultrasound was done, and we were out the door. I took the girls back to the camper because I needed some of Jesse’s medicines.

Since finding out the surgery is not until Thursday, Jesse has been eating everything in sight. Before returning to St Jude for radiation, I took the girls to Chick-fil-a. I figured it would take them 30 minutes to get the food and eat lunch. No they are really fast and efficient. And Jesse was shoving the food in her mouth. I had to remind her several times to slow down because we weren’t going to a fire.

We arrived back at St Jude at 1:50pm. This was way to early for radiation, and going into isolation would have sent them into a tailspin freakout because of not knowing what to do with us.

The girls and I set in the shade for about 10 minutes before demanding Jesse started pitching fits. I can’t wait for this kid to be a teenager. I am going to find ways to aggravate me all in the name of “you had it coming.”

When we went into the isolation holding area at 2:10, there was no one there. About 2:15pm, a group of doctors or nurses came out into the inner holding area, but they didn’t open the doors to let us in.

I called the Radiation Oncology Clinic. I explained that while our appointment was not until 2:30pm, we were here early because of trying to get through isolation to the clinic. The radiation oncology nurse said she was coming to get us, and about 7 minutes later she appeared with a wheelchair for the girls to ride in.

The radiation child life specialist met us at the door. They were not ready for Jesse yet on the radiation table.

While we were waiting, the Ethel study nurse came by with a certificate for Jesse. I told her about the CVL being removed. Turns out the two people who can examine the CVL for bio-film are too busy right now to look at Jesse’s. So they are going to basically just trash it. They will keep her results from the study when she was getting the ethanol/ placebo. They just won’t look at her line.

I am a little bummed about this. Another reason that I asked for the port was to make sure that the Ethel study doctors received Jesse’s CVL. If we had the surgery at CHKD, I would have had to chase people to make sure it was mailed back.

Finally at 3:05pm, they came for her. Jesse happily walked on back with them. This time took 45 minutes because they needed the doctor to complete the final setup for her. Now it should only be 20 minutes.

Chris and I waited in the room because I don’t want to be an issue. I don’t want to talk back with Jesse and her think that she can flip out. I also bribed her with Starbucks. If she laid still on the table for 20 minutes, then she could get iced coffee.

At 3:50pm, Jesse returned. She made it!! She was so excited about getting coffee. The child life specialist told her that not many 5 year olds could hold still as she has done.

I also pointed out to Jesse that once her port heals in 7 to 10 days, we can go swimming when she finishes her radiation. I also asked her how she felt. She said great. I then asked her how she felt after having propofol the other day. She said tired. I am hoping this realization that propofol doesn’t really make you sleep sinks in.

The girls were excited to return to the camper and play with the Barbie Doll. Thank you Jimmy and Nancy for the doll and clothes. They have really enjoyed dressing and undressing their dolls.

Thank you for the card, Mt Pleasant Baptist Church Tuesday Morning Bible Study.

Today the repairman is returning to change the fan on the fridge. I’ll be glad to have that fixed. 🙂 Jesse has radiation at 2pm. Then tomorrow is the big day because of radiation, surgery, and collecting another stool and urine sample. It would be so awesome if for the last two weeks we are at St Jude, we aren’t in isolation. Yesterday they had a huge viewing party for the USA soccer match. Could Jesse participate? Nope.

Posted in Round Two