Of the way done! Radiation ended yesterday with a lot of fan fare (Some good, some I’m just over this)

Jesse woke up yesterday morning starving. And when we stopped by clinic to draw labs she screamed for 10 minutes over not being allowed to have a fiber bar until after her treatment was completed.

We went upstairs to get ready for our last treatment. The nurses and childlife were and have been wonderful. They threw her a little party by giving her some sparkly shoes, hat, Cabbage Patch named Rodney (although she called him Bella and then Jesse), and her toys that she had played with while waiting for all the other treatment times.

We made the last “field trip” over to Norfolk. There they let her ring the bell and the technicians gave her a teddy bear.

The radiation oncologist wanted to see us before her treatment. Why I don’t know.  It was a doctor covering our non-existent doctor… who barely knew anything about Jesse’s case. And didn’t tell us anything. It just upset Jesse for the delay in getting her “picture.”  Turns out that the technician was mistaken in saying that the CT Scan they did was to see if the tumor shrunk…. maybe it was that for them… but they obviously have no intentions of sharing that information. And when I asked her regular oncologist he told me that was more than likely to check where the fields of radiation were hitting. We have to go back in a month (on Jesse’s birthday) to see them again. They made an exception for us allowing her to be seen on a Tuesday because the doctors don’t normally have appointments on Tuesdays. They did this when they realized I was driving over an hour… and their nurse didn’t realize until that last treatment we had been doing that everyday.

We did this all before she was given her ketamine and verset. This time the doctor gave her a little extra ketamine… so it took some time to wake up. They actually carried her back to clinic on a stretcher and aggravated our clinic nurse by calling a bunch of times.  I didn’t realize they had done that… Ah we would have to go out with a bang 😉

Jesse’s counts are great and we asked about going to see her cousin Joel explaining that she had never been to their new house. Our doctor looked at me like I was nuts. But I don’t think he realizes that since the diagnosis she hasn’t left Hampton Roads. And since the stem cell transplant, we have not had her anywhere but home, hospital, and the grocery store twice (it’s the Farm Fresh across from us… she definitely hasn’t been in Walmart). Oh and her great aunt and uncle’s , great-grandparents’, and neighbor’s homes twice briefly to pick up her sister.

Her doctor mentioned that the next time we go into clinic she might not have to stay in isolation. We’ll see if that happens 🙂

Our next round will begin either later this week or beginning of next with MIBG, CT Scan, Bone Marrow tests, and blood work.  Hopefully our nurse can schedule it for the earliest possible time.

Around 1pm we got to head home. I stopped in Suffolk to get us lunch, of which Jesse started screaming that she didn’t want to eat in the car. I told her that I was eating. And she could eat hers at home. When I started eating she asked for hers. She is just exhausted, which causes everything to be wrong.

She fell asleep on the way home, and slept for a long time. I was able to stain the top of our large deck before she woke up.

By 8:45pm, she was asking to go to bed. I plan to let her sleep as long as possible this morning.

Today Mike took Jesse for her radiation treatment.  They rode up in the elevator with another set of parents and a baby.  The father looked at Mike and said, “Your baby has a tooth ache?”  His wife elbowed him hard in the ribs. Mike explained that because of her stem cell transplant she has to wear a mask when in the hospital.  Jesse was confused by his comment and said her teeth didn’t hurt.

He overheard the wife tell her husband as they walked away from the elevators, “That baby has something totally different. She is sick.”

When Mike told me I couldn’t help but laugh. Bless that man. I hope that the only pain his baby ever has is a tooth ache. 🙂

First off I am very sorry for the families of the two truck drivers that were unfortunately killed this morning.  It has made for a really crazy, crazy day for a lot of people. And reinforces that one action no matter how big or small sets off tons of chain reactions.

We hauled out of here at 7:07am to head down to CHKD. I had to drop Chris off at her great aunt’s before hitting I-64.

Before the Camp Peary exit there were signs flashing big trouble ahead. I decided to get off at Camp Peary, but then at Ft Eustis I thought getting back on I-64 would be a good idea. Wrong. It took us about 45 minutes to travel what would normally take 5 minutes. To top things off as we were sitting in traffic, Jesse and I suddenly felt ourselves jolt forward. The car behind me luckily only hit my hitch (yeah for the hitch). No damage for me, but he had a square in his license tag. And luckily we weren’t hurt because Jesse yelped when we were hit. And fortunately, I had left space between me and the car in front.

At 8:30am, I called Day Surgery to see what we needed to do because it was obvious we weren’t going to make it by 9:00am for check-in. By 9:15, I was still 1 mile from the Jefferson exit, with 4 lanes of traffic merging down to 1 to get off the interstate. I opted to head west on 143, and cut down through Kiln Creek, out to 17, and then back onto I-64.

I feel really bad now that I know what happened that I was so flustered this morning. I have severe time issues. I can’t handle being late…

We arrived at CHKD by 10:51am, and of course there was a line longer than my house to get cleared with security. Thankfully, one of the security officers realized who I was, and let me zip on through.

The anesthesiologists were very accommodating, and rearranged their schedules so that Jesse could get her radiation. We went over to Norfolk General at about 11:30am.

When we arrived, the technician asked us to go into the CT Scan room. Our radiation oncologist ordered the CT Scan so he could see if her tumor shrunk any. If it has, they will reduce the numbers of treatments to keep from frying her kidneys. (That is exactly how it was put to me)

The doctor sedated Jesse, and I was allowed to stay in the room to watch the CT Scan process her pictures. I really wish I knew what I was looking at…. to me there are parts that looked like this enormous grey blob as we were shown when she was first diagnosed. But it looked like after the initial scanning, the computer seemed to go back and clean up the appearance, but I could be totally wrong since I don’t have any radiology knowledge.

Afterwards we transferred her to the stretcher and into the radiation room. She did wiggle a little, and the doctor gave her some more sedation drugs. This didn’t hold her too long, because she was stirring as we left the radiation room.

While we were waiting, I lost it a little. Today has been overwhelming in a way… traffic, time issues, getting hit, and then seeing the CT Scan and her little insides. I really wanted to see the scan. It’s hard to think that thing is in there and can’t really come out.  The technician complemented me on how good she was, and all I could think was I hope God lets me keep her.

Jesse woke up from sedation pretty quickly, and by 1:00pm we were in the truck and on the road.

We stopped for some lunch and gas, which Jesse proceeded to throw up lunch causing an emergency stop on an exit ramp to clean her up. Then we were on our way, and safely home by 3pm.

Yeah… my mental function and ability to act rationally drops off. Actually it gets up and runs off screaming. Sure I could sneak food in the morning, but I feel like this isn’t fair to Jesse.

Jesse had radiation at 10am and labs at 8:15am. We headed down to CHKD at 6:30am.

Labs were drawn, and then we headed upstairs to head over for radiation. Her radiation oncologist was very pleased with her skin condition and lack of nausea. She wouldn’t stay still on the table so they gave her an extra dose of ketamine and verset. This caused her to take a little while to wake up in the PACU, but the nurse was really nice letting me come back before she was awake.

By 11:45am, we were back in clinic to meet with her doctor and see lab results. They were pretty busy, but by this time we were thinking feed me! I know this is the wrong thing to think about only us. There were others in clinic who were also probably waiting for different procedures were they couldn’t eat, but when the stomach is empty… rationality is empty too.

We met with our doctor who was not overly pleased that she lost weight (and he won’t be thrilled that I can’t get her to eat dinner tonight : ( ) Calories, calories, calories is what he kept stressing.

Her ANC is 632… so we are on neutraphenic precautions. Next week I am thinking she might need blood products even though her red cells and platelets are still really good.

We talked briefly about her upcoming antibody and accutane treatments. I asked about staying with her. Sometimes his lackadaisical attitude drives me nuts. “You can stay with her as long as we get the right people” said in the tone of why are you worried about it. Because if something goes wrong, I don’t want her to go through it alone.   Then he needed to see another patient.

Don’t get me wrong. I really like our oncologist, but I am sure I drive him berserk with my need to plan ahead attitude. And I am sure that if I lived in his world, I wouldn’t have such a need to know ahead. There are times I would like to say to all these doctors and nurse, I constantly plan around your schedules… how about for once you plan around mine?  My family’s life has been thrown into total chaos. We don’t get to come and go as we please because it’s not safe to be in public. All the activities we’d have normally done… we don’t do to protect Jesse. I feel like a shut in.

Luckily the nurse educator came along. She told me that I could stay with Jesse in the PICU. We will be admitted there to stay there for the approximate 4 days of each treatment.

They will give her morphine from the beginning because the antibody can cause nerve pain… if they wait until after they start treatment, they can’t catch the nerve pain. But once the treatment stops the pain will stop. Being that morphine reduces appetite… calories, calories, calories before hand.

She might swell a little, and she might experience flu like symptoms. She also might have a fever.

Infusions will take 10 or more hours. And occur in 5 rounds. The accutane will occur with these rounds, and for 1 round afterwards. Jesse will also receive a shot to increase her white blood count during this time.

I am sure that I will learn more as we go through each round.

By 1:25pm, I was fit to be tied. I know that our nurse was extremely busy, but I had a staff meeting at 1:30pm I needed to be present for. Plus Jesse and I needed food. I found her and said I have a staff meeting. I really need to get out of here. She was great. She’d been trying to get us together. And she quickly got us out the door.

I made my meeting via phone in time to watch this woman talk her way out of paying for parking. The deck were we park to access CHKD charges for parking. Luckily CHKD validates so that I don’t have to pay for parking. After the woman convenienced the lady to let her come back around, she drove off the lot, and through the MidTown Tunnel, stopping halfway through the tunnel.

Jesse and I arrived back home at 3pm to find that Christine had lied to grandma in order to get her hands on my video camera.  Then as I was writing this they progressed to hitting each other with stockings. They are in there rooms ( I would say for the night, but Jesse slept from 2:30 to 5pm… which means she’ll stay up till around 11:30pm. Yeah.)  I’m not going to down the whole bottle of rum, I’m not going to down the whole bottle of rum…

When you are hungry it probably tastes the same as crackers, but I digress…

At 11:30am, Jesse’s 7th radiation treatment occurred. Of course, she had not eaten anything since 8pm the night before, and the verset and ketamine are now starting to wear off as we are arriving in the door of the PACU.  I didn’t even have to go wait in surgery waiting today as I normally do because she was calling for me as the doctor was parking the gurney.

Once Jesse established that I was there, she began asking for crackers. I’m glad that she wants to eat, but at that point… it’s not a good idea. Bless her heart she was so hungry when she saw the nurse’s clipboard, she sat up and started leaning for it, mouth open. We realized a second before she chomped down that she thought it was a cracker. I stopped her be holding her at the shoulders and the nurse move the clipboard out of chomping range.  Jesse looked at the nurse asked for crackers and left her mouth open like a little bird.  It’s an expression that is hard to describe… her eyes are bopping because of the ketamine and her body is waving around because her balance is still way off. The nurse and I laughed, what else can you do.

After 15 minutes, Jesse was moved to the step down room. There we hang out until she is a little more awake to head home. For some reason today, it worked out where we hung out longer than normal. The nurses were very apologetic, and while it was frustrating, I wasn’t upset with them or the doctor. The doctor wrote the order for Jesse’s heprin in the old format that is no longer accepted by the pharmacy ( a policy that just changed).  It was an episode of trying to mean well and it didn’t work out.

Overall the doctors are very impressed with how Jesse is handling radiation. We saw her radiation oncologist yesterday. He was very surprised she wasn’t nauseous and that she had gained weight. When we began Jesse weighed 11.2kg. Tuesday she weighed 11.7kg.  Zofran is a wonderful drug in helping with this. Everyday that we leave radiation, she is begging to eat. Most mornings are very frustrating for her when I tell her we have to wait to eat until after her “picture”.

“Picture” is what Jesse calls radiation, and sometimes they do take Xrays to make sure they are in the right place. In the room with the huge radiation machine is a table that moves and a picture of a mountain and lake. Everyday Jesse goes in the room happily lays on the table and calmly hangs out while they adjust her under the machine.  She and I talk about when kind of fish are in the lake, where we will pitch our tent, if it is warm or cold, and so on. The anesthesiologist is usually giving her the ketamine and verset at this time too, which doesn’t take too long to knock her out.

The technicians, nurse, doctor, and myself step out of the room. The doctor and technicians head to a monitoring room next door. The nurse and I wait in the hall.  The huge (and I mean huge… makes me think cold war era survival bunker type door) swings shut.  If it wasn’t for the door shutting, the radiation machine rotating around, and being in the room by herself; she wouldn’t need sedation.  If only right?

Once the treatment is done, we go in load her on the stretcher and back to PACU. Today is the first day that she really woke up right at the door of PACU. And that was great because I got to stay with her 🙂

Our stay in PACU can very from 1 hour to 2 hours. All of this makes for a long exhausting day for me, but Jesse comes home and plays with Chris as if nothing has happened to her.

Today began Jesse’s radiation treatments. Her time was set for 3pm. No food from midnight on. No clears after 11am. She didn’t do well this time. I figure that seeing her normal doctor is what sent her in orbit.

We had her normal clinic visit at 11am.

At clinic when Jesse saw her doctor she asked if she could eat, not realizing that he wasn’t the doctor that could give her eating permission. When he looked at her apologetically, Jesse bawled. After we calmed her down, Jesse and I hung around waiting for her time to be at Day Surgery.

While we waited Jesse’s nurse and I talked about what could be done to help other kids facing radiation from having really late times. Of course, we came up with nothing. It would be nice if the oncology clinic could have their own anesthesiologist, but there isn’t probably enough profit in that.

At a little before 2pm, Jesse and I traveled up to the 3rd floor. When we arrived in Day Surgery, they were basically packing up for the day. The lady told me to sign in on the clipboard ( kind of hard when the page is gone… I am getting a definite lesson in customer service… ). When she realized that we couldn’t sign in, she saw us immediately. I had to reminder her that Jesse needed to be in isolation because of the stem cell transplant.

When we walked back towards a room, one of the nurses stopped us because she had already shut the computer in that room down. The room we were directed to irritated her because she’d shut the computer down in that room to. I am pretty sure I irritated the mess out of her because I felt like she was trying to bully me and she was displeased that I was balking on changing Jesse’s clothes. After our go round on the clothes, I noticed she wasn’t the nurse to come see us anymore. Good riddance. I am not interested in being bullied especially when I have not had anything to eat since 7:30pm the night before myself.

Luckily we had the same anesthesiologist. I did have to ask everyone to wear gloves when the handled Jesse’s CVL. Why that is not hospital wide policy blows my mind.  I’m tired of looking like freakazoid mom…. but I will continue to do so because I love my daughter and that CVL line goes right into the blood stream. And I don’t want bacteria in there.

We made the trip over to the radiation machine. The radiation machine looks totally different from the doughnut shaped CT Scan machine. I was really concerned that Jesse might freak, but made a point of saying that the table would carry her through the tunnel. She accepted this and happily hopped up on the table.

They had some trouble linking the computer images to the machine, but after a few minutes all was set. This radiation treatment took about 30 minutes because of getting the machine placement correct.

We made the trip back to PACU, and I went to the waiting room until the nurses were ready for me. As I was waiting Jesse’s oncology doctor came into the room to talk with another mom and dad. I wish I could have talked to them, but you never know where you are intruding. I wasn’t interested in knowing what was wrong, I just wanted to tell them I was sorry and if there was anything I could do please let me know.

Jesse awoke around 4:30pm, and we left around 5:15pm.

I am extremely extremely proud of Jesse and how she handled not being able to eat yesterday. She would tell me that she was hungry, I would explain that we had to wait for the doctor to give us the all clear, and she’s say okay.  Funny little kid.

She and I headed for CHKD around 11am. I love the HOV lane on 64 past the HRBT when it is open the way I am going. 🙂

On arrival I had to give my license at the desk so they could create a sticker for me. Then we went up to the 3rd floor to Day Surgery. This isn’t probably the nicest way to explain how it felt in the waiting room but it made me think of the DMV.  There was a lady sitting behind a glass window with a slot. She was the only person I saw walking in. The lighting was very low (might be a psychological reason for that). On a shelf there were several clipboards. The lady in front of me took a clipboard, and I did the same.

Suddenly another lady appeared barking that we needed to sign in. Yeah not real clear when you have a ton of clipboards in the same place, people who haven’t eaten because their children can’t eat, and just feel confused.

The lady immediately got Jesse’s information. I told her I was very displeased at how confusing this entire process had been. She was very nice to say she was sorry we had that experience (but it one of those apologies that are said, but you know it won’t get passed along and nothing will happen to make the process a little less confusing).  I asked her for a schedule, and she was able to find the right person who had it.  Now I know that Jesse will have 20 radiation treatments every day starting May 17th and ending June 14th minus holidays and weekends.

Then they took us to a room in the back to keep her isolated because of the stem cell transplant. And we waited. Jesse was required to be there 2 hours prior so they could prepare for her. When the nurse was ready she came in, and we met the anesthesiologist in the hall as they were weighing Jesse. Funny thing was he was the anesthesiologist when she had her biopsy performed.

He and the nurse wondered why she had been scheduled so late in the day.

As we were waiting for our time to go to Norfolk General, the 3rd floor child life specialist popped in to say hello. We asked her to tell our other child life friends hello. Even better, they came to see us 🙂

One was extremely nice in walking with us over to Norfolk. The winding trip over takes about 15 minutes even though if you were to walk outside and around, you’d be there in 5 minutes.  And the trip gives a new meaning to turn at this painting ( which one is a tree…).

We went to a room with a CT Scan machine. I played the hand through the tunnel game with Jesse, and the child life specialist played peek-a-boo with Jesse through it. Jesse thought this was great, and was very happy to get up on the table to take a “ride through the tunnel.” The anesthesiologist  began giving her the medicine (Verset, Ketamine, and Profol) and within seconds she was glossy eyed.

I left the room while they conducted the CT scan and placed X’s on her body for where the radiation would enter. The X’s are covered with tape so they won’t wipe off.

Within minutes they came out and said they were done. Even the anesthesiologist  was surprised. He thought it might take an hour for the simulation. We waited for a nurse from PACU, but after a few minutes, he figured she might have gotten lost ( I would have been lost too). And we headed back to the PACU.

At PACU, they let me go in with her, but asked that I step out to wait for her while they did their assessment. As I was waiting, another of our child life friends stopped by. In no time, our anesthesiologist told us we could come back. The child life specialist hung around with Jesse and I until Jesse woke up and wasn’t as spacy. I can’t express how much I greatly appreciate them taking the time to come visit us. They have so many responsibilities, and it is fantastic they took the time to come see us. 🙂

Around 5pm, Jesse was allowed to head out.  Even with the midtown tunnel being like it is, we were home by 6:30pm.

The past couple of days have been very frustrating and infuriating. And the only thing that I have really accomplished is looking like a whiner. I write this all here not to glorify or make myself seem better, but to free myself because I am having a really hard time getting past it. I am not proud or happy that any of this happened.

Yesterday afternoon I received a phone call from I guess Day Surgery, but I really have no idea because besides the lady giving me her name… I don’t remember a location in the hospital she worked being mentioned. And even now I don’t remember a name I got so angry.

She called to tell me that Jesse’s radiation simulation and CT Scan would occur at 2:30pm on May 11. 2:30!! Really 2:30?I told the lady that this time was totally ludicrous. She is 2 years old weighing 24lbs on an appetite enhancing drug.

Of course I know that the lady that was given the job of calling me had no control over the schedule. And I figured there was nothing that could be done. I was so angry that when I talked to Mike, I lost it. Mike wanted the number to call the person that called me, but I explained to him that there was no point. Without my knowledge Mike began calling CHKD to try and figure out to change her appointment. I have asked all along for the earliest times,of course knowing that the people I was begging to plead with the sedation schedulers had no more way of trying to reason with them than me.

It really makes me angry that no one called and asked me what a convenient time would be. What would be the best time for my daughter to keep her the most comfortable? I am dealing with some severe anger issues over this of you can’t tell… and quite frankly I need to get over them. I know that I am no different from any other parent of any child at any age that wants their kid to not have to be hungry. I would add comments about what I think policy should be… but I really don’t know what their policy is so… total waste of time and energy. They might already have the policy of holding a slot for a special needs child, and that slot is filled.

Mike learned through his phone calls that Jesse wasn’t listed in several computers as having an appointment at that time. Eventually when he called our clinic nurse, she located Jesse. Bless her heart she tired her best to get an earlier time for Jesse. She was just as unhappy over the time as we were. When she called scheduling to try to find a better time for Jesse, the scheduler got nasty with her.

This really aggravated me, and when my brother suggested I call patient advocates, I figured I’d give it a shot. Of course that was just a cluster… We didn’t have the whole picture because no one told us where we were going, only for sedation and then to Norfolk General for the CT Scan.  When I was called back for the final time, the lady said she would see if she could pull strings for us this time as a courtesy. I told her to forget it, we’d take the time that was given for her and deal with the best we could. Heaven forbid I keep my daughter comfortable. Apologized for wasting her time and hung up.  She never said I was a whiner, but using the word courtesy made me feel that I was nothing more.

I lost it so bad from that call. I haven’t not hyperventilated ever in my life, but I was so angry at that point… Mike was outside talking to a neighbor so he missed all the fun.

I really didn’t want to go to clinic this morning at all. Nothing like feeling you have caused nothing but trouble. I am sure in the computer next to Jesse name is “Mother is big fat Whiiinnnerrr!!!.” Funny how when you don’t want to be somewhere there is no traffic or slowdown at the HRBT. And it was 7:00ish when we rolled through there.

At clinic, everyone was really nice, and thankfully our nurse wasn’t mad at me. I did tell our doctor that I wasn’t going to give her anymore of the appetite enhancer until May 18th because her first radiation is May 17th scheduled for 2:30pm. I just feel it is torture to give her that and deny her food. Whether he agreed with me or not, I’ll never know. He is good about being neutral on certain things.

Jesse’s labs came back fantastic. And we were almost out the door when the patient advocate found us. I was trying to get out of there before that happened. I really didn’t want to deal with her. She was very nice, but I think I managed to confuse her pretty good.  Our nurse was able to get it cleared up for her.

As I was driving home my phone rang.

Lady: “Hello this is CHKD Day Surgery. Do you have all your information for your daughter’s procedure tomorrow”

Me: “Well I know she can’t eat after midnight, and nothing after 8am” ( I said)

Lady: “Yes”

Me: “Do you know where we go?”

Lady: “Hold on let me look it up”

Me: “If I loose you please call me back because I am getting ready to go through a tunnel”

Mental head though: You are going to call me and ask me if I know what is going on and not have our all our appointment information in front of you. Really?!

Lady: “Yes ma’am you’ll come here”

Me: “Where is here? Day Surgery on the 3rd floor?”

Lady: “Yes”

Me: “Great. Thanks. See you tomorrow.”

Luckily our clinic nurse called them to. She was told that Jesse can have clear foods like Jello (which she refuses to eat, maybe she will tomorrow) and apple juice until 10:30am. That will make it a little easier I hope.

I feel totally in the dark on radiation. I really wish that someone had set down with us to explain it all down to the smallest detail. I feel like I am flying blind. What sedation drug will they use? Can I go with her for the simulation? Will a doctor be in the room? What is the rest of the schedule? How many treatments? How often? Can I have a copy of the schedule? How exactly is this going to work? Maybe tomorrow I will get the exactly how this works tour.

I do know now that I can go to Norfolk General with her. I also know that it will be the technicians running the machines. I did ask for the schedule, but that seems to be the greatest mystery of the universe. Our clinic nurse told me that she can’t even find it in the computer system. So tomorrow is going to be super frustrating because of the lack of food ( I can’t eat in front of Jesse especially if she can’t eat. That is just wrong) and I have this feeling I am going to have to fight them for a schedule. And I don’t even really know who them is that I am fighting to get the schedule from.

This just feels like it all at someone else’s convenience. The only people that have ever asked about my and Jesse’s convenience has been the oncology clinic. And basically at this point I am very frustrated that I don’t understand what is going on and I need times. I need to plan for where Chris will be, and I need to keep my boss in the loop. While Jesse is a huge responsibility and her health is really important, I have other things that can’t just be dropped. I can’t just drop Chris. She’s not old enough to stay home alone. I need to plan for where she will be so that I can coordinate with the people who will watch her.

And I know that Mike is more than willing to help, but he a job that needs him to be on location. I do have a job that allows me to work anywhere, but I need to keep my boss in the loop of where I will be. We have to work to keep everything going.

I really want my boring life back. I want my daughters to be 100% healthy and the only issues we are dealing with are not listening or paying attention.

Today Jesse and I headed out for CHKD. We hit the CHKD clinic first for labs and results of the CT Scan she had yesterday to check her lungs. Jesse’s white blood count is increasing. But her ANC was 774.  Her red blood is maintaining at 9.2. And her platelets have increased to 185.

Her CT Scan showed cloudiness in her lungs, even though 2 doctors don’t hear any rattling in her lungs. (Her radiation doctor heard some wheezing when she breathed in and out.) As precaution, her primary oncology doctor placed her on Azithromycin. We don’t know if the cough and cloudiness is fungal, viral, or bacterial. We can treat the fungal with V-Phen, and the bacterial with Bacterium and Azithromycin.

Then Jesse and I met with the radiation oncologist.  His office is located in the maze that is Norfolk General. Our nurse (well the one that usually helps Jesse when her primary nurse is out) was super nice and walked us over from CHKD. (Who also called me at home to check on us. How totally awesome is that!)

The first thing that I noticed was the overpowering smell of cut flowers. Jesse noticed too, as did her nose (started running). What I really love was this huge sign right behind the flowers that said “Attention! Due to allergies, please refrain from wearing perfume or cologne.” (Not the exact wording). I guess people don’t think about the fragrance of flowers falling in the same category.

I know that people mean well with live flowers, and I like them as much as the next person. But when you have an adult or child fighting cancer, well they harbor bacteria. Not to mention in Jesse’s case I have noticed that her nose runs now in their presence.

In fact I said something to the nurse. I did preface it with a warning that I was going to sound like a word that rhymes with itch 🙂

She told me that a patient who just finished treatment dropped them off. I guess they are more informative over at CHKD.

I also decided while I was there if I get cancer, I am going to tell everyone I’m 18 so that I can get treatment at CHKD. It is so much more friendly over there. So full of hope and caring people. At Norfolk General, it felt so stark… depressing… like everyone there was fighting cancer… and it might not be that great of a chance for survival. I know that as adults we are supposed to face things differently, but it would be awesome to have the same level of friendliness and love that is at CHKD.

Our radiation nurse collected Jesse’s information (She was very nice, and really good to Jesse). Then we met with the radiation doctor.  He told us that Jesse would have 12 treatments. Each lasting about 5-10 minutes, but since it involved sedation, the overall timing would be longer. I asked him if these treatments would be over 30 days. He  looked at me like I was crazy. I then explained that our primary oncology doctor mentioned 30 consecutive days ( excluding weekends). He did say he would talk with him about that since their time and treatments differed so much.

He then went and looked at all of her scans. When he came back, he told me that since the tumor horseshoes around her spinal chord, he can’t avoid hitting it. This is going to increase her chances of curvature of the spine. He said 30%, and she might spend a few years in a back brace. He also said that this will cause her to be short. I stopped him. I don’t care if she is short. I just want her to have a great quality of life. Then he went onto fertility… I stopped him again. Because from what I have seen, no one can tell you if you are fertile or not. They just can’t.

He did mention that the mass was large… heard that before. And that they couldn’t avoid hitting her kidneys with radiation. I didn’t think to ask while we were there if this would cause her to have dialysis. I did ask the nurse that discharged us from clinic, and she told me that no she had not seen that at all. Reason being is that several lower dose radiation are pointed from different directions, all converging together at the tumor site.

He left to help start getting things scheduled. Jesse will have to go there to have another CT Scan, one that their machines can read. Then a week from that we will begin radiation. His nurse called sedation at CHKD to schedule a time, but let us go because she wasn’t sure when they would call back. I begged her to impart on them as early as possible because I really want Jesse to maybe be able to eat lunch and dinner. She only weighs 24lbs! I can’t afford for her to lose weight. But I know that I am not the only parent who probably has that axe to grind over what time their kid gets sedated.

I was a little depressed when we left radiation. All of this were things that I have heard before, and it’s my fault for getting used to what is happening. It’s hard not to. Life goes on no matter what is happening to any of us. The world keeps revolving.