You served us well dear CVL,
But alas she had to grow
So now you hang out in a vein
That is too shallow.

Cheesy yes. But as I was writing the title it made my think of rhyming.  And I have not had anything to drink today, but if Chris keeps pretending to be Bob or Taylor Swift I might have to.

Sidetrack to explain Bob. I think it is the take off on the Disney Channel “Good Luck Charlie” show. I caught her and Jesse getting married earlier today. Then she keeps walking around the house asking me my name and introducing herself as Bob. To which Jesse asks: “Bob the Builder?”

Mike asked her what she does as Bob. Chris told him that she goes to work and comes home to sleep. (Mike has been working a lot of hours this week) He asked her what Bob’s wife does:  her reply “She babysits.” The wife is Jesse who is walking around holding a Minnie mouse and naked doll.

Then Mike asked her what Bob would like to drink. He was trying to trick her into saying beer. But she replied with Sprite.

Back to Jesse’s CVL.

Since last PICU stay we have been having trouble on and off with getting blood return.  The line is in a horizontal vein (sorry it’s the best way I know to describe it) versus the super vena cava which is vertical. Because of this when we try to get returns of blood the vein wall blocks the blood. It will allow heprin and saline to flow in.

On Thursday at clinic, we opted to stick Jesse in the arm for labs. I know this is a very stressful process for everyone involved, but we needed the labs while we waited for the TPA to work. We tried the lines after an hour of the TPA sitting there. Red line worked. White line nothing.  We decided that I would try that line again when I got home.

Our doctor also decided that we needed to replace the line. Right now it looks like the line will be in her through December. As tired as I am of that line and worrying over it, it will save us from pokes in the arm.  She will need labs done at least once a week while we are on the Accutane to watch her levels. Plus when she is getting the GMSCF shot they want to watch her ANC levels.

On September 21, we will meet with the surgeon who put the CVL in. And on September 30, she will undergo surgery to put the line back in her super vena cava. I am not sure at this point how her line will affect whether or not she gets the 96-hour infusion of  IL-2 (T-cell booster) which was supposed to start September 26 and end September 30.

I am sure I will find out next week 🙂

Other than her CVL, her labs where great. Her ANC was over 10,000.  We did have a question about the shots. For the last 5 shots, I have noticed a large welt on Jesse’s leg at the injection site. When I asked the doctor her said this was possibly a level 1 capillary leak (aka third spacing). The antibody can cause this. If Jesse reaches a level 3, then the antibody will be stopped and not continued. Hopefully we can make it through the last two rounds. (There is currently in 2011 no study saying 3 rounds is better than 5 and vice versa. As a parent you just want you kid to get everything that will help them live).

I tried the white line when I got home nothing. And as of yesterday, the red line had stopped working too.

Today was beyond frustrating…

I padded Jesse’s diaper before we headed down the road. At least I was able to avoid the stress of trying to get a urine sample.

However her lines, her lines had a different idea.

When we arrived at clinic, we weren’t on the schedule.  They were very gracious and added us on.

When our nurse went to draw labs nothing. This was at 8:30am. Around 10:30am TPA was put in Jesse’s lines to unclog them.  Around 11:30 am we tried to draw labs. White line… nothing. Red line… Halleluiah! I was concerned that Jesse was going to need blood since her red blood count was 7.9 when we left on Saturday.

Luckily Jesse’s blood counts were all great. Jesse always thinks being in clinic is great because she has a ton of people to pay attention to her.  Today I saw that her doctor gave her a stamp just so he could try to get something done because she wanted to “work” with him.

After labs came back, our nurse hepranized Jesse’s lines. In doing that, her white line finally gave us a blood return.

We headed home at 2pm. On the way Mike called to say he was working until dark the remainder of the week. It didn’t dawn on me till later that I have Jesse’s shot that needs to be administered.

Thankfully our neighbor had let Maggie out. I thought that Mike had talked to her about letting Maggie out, but I guess he thought I talked to her.

Around 5:30pm tonight I gave Jesse her shot. Christine held her hand, while I held Jesse in the car seat hold. She did amazing with me holding her and giving her the shot. She screamed and didn’t even cry.

Sorry I have been delinquent in writing. Jesse has been fairly active this round making writing and getting work done difficult.

On Tuesday, Jesse and I came to clinic. We were late because traffic has returned from summer vacation. At clinic Jesse’s white line was the only line that would give us a blood return and enough to draw for labs.

By 10am, PICU was ready for her. And upstairs and into the same room we have had our other 3 stays we went.

Thank God we have gotten fantastic fabulous caring nurses this round. If I could have this group the other 2 times we have to be in PICU, it wouldn’t be that bad 🙂

Mike and I switched places Wednesday midday. I gave Jesse her shot before leaving. She has become so used to it that she doesn’t even cry, and today she barely screamed.

On Thursday I returned with McDd’s. Jesse ate that and half my quarter pounder. And still wanted more! On Tuesday she weighed 11.7 kg. Today she weighs 12.2 kg. Most of that is due to fluid.

The great thing this round is knock on wood she has not held her urine as she did the other two rounds. She has been going very well. Plus her fever didn’t start until later in the evening and was gone during the day. Yeah!

We did have trouble with her lines. On Wednesday morning they were not able to draw her labs from the CVL. This involved bringing in VAT team, and me reinterating I didn’t want a certain person near her.

The nurse that came from VAT was wonderful. She let me look at Jesse’s x-rays. Her line is definitely no longer in the super vena cava. It is in a vein. She felt this was because Jesse has grown.

She also felt that I and the nurses would never get another blood draw from those lines again. ( I felt she was wrong because onTuesday and Wednesday the leftovers of Lee were over top of us. And for some reason low pressure makes her lines act up).

The decision was made to insert a line in her arm for fluids and blood draws.

I left before the line went in. Mike said that they got the blood draws and after that nothing. He also said that Jesse embarrassed him horribly by not wanting a doll that was brought to her. Poor Mike 🙂

Strangely on Thursday, the line began giving a blood return. The nurses were able to draw labs Friday morning, then it began acting up again.

Friday we also had a little confusion about her bactrum.  The PICU resident missed seeing that in her medicine list, but luckily that evening we had it all straight.

By Saturday morning at 12am, we were upstairs in 808. Jesse stayed up til 3am. I think our nurse was a little concerned she was up so long. 

The next morning Jesse got her shot, antibiotics, a round of wagon racing, and we were out the door. We had debated about giving her a red blood transfusion because her red blood count was 7.9, but decided to see what happened.

Jesse and I were home by noon 🙂

Jesse and I made the early trip down to Norfolk on September 2nd. I was hoping that this would be a short visit due to potential holiday traffic. I should know better than now to make those kind of wishes 🙁

I was amazed at the amount of police officers I saw. I saw 10 police, and all but 1 had someone pulled over.

At clinic we went through the normal procedure of getting blood to test her ANC and chemistry. The chemistry in her blood I think is important for knowing if she can have the GMSCF shot. This shot will help rev up her immune system to get the antibody next week. The antibody is more effective when the immune system has more white blood cells running around.

They also needed a urine sample. I had thought about padding her diaper before we left, but couldn’t find anything that I thought wouldn’t potential skew the results.

By 11 am Jesse had peed 3 times,  but we hadn’t collected enough for a sample. If I had caught the one where she peed in the floor… that would have been enough.

As we were waiting, a friend of ours was there for her final post chemo checkup. She and her mom came to the back door of the clinic and rang the doorbell. I don’t know what was wrong with all of us, but no adult answered the door. Jesse ran back to the door and waved at them, but she couldn’t figure out how to let them in. Luck for us they weren’t too mad (her father was sitting across from me).

At 1:00pm, we put her on Fred the IV pole in hopes of getting her to pee. My frustration level by this point was through the roof.

While we waited, we decided to change Jesse’s tape and caps. I know that Mike was excited we did that down there.  I was hoping she’d pee, but no luck. Finally around 2:30pm she went to the bathroom.

We left CHKD around 2:45pm. By then, traffic was already backed up at the Midtown Tunnel. An Amtrack Thruway Bus #104 cut me off. I despise that. Here I was patiently waiting in line since the light, and all these extremely rude people come flying up and muscle their way in so that heaven forbid they have to wait an extra 10 minutes… which is what I had been doing.

Once I got past the Midtown Tunnel, I started hearing that the Monitor Merrimac and HRBT were backed up to. Luckily it was on the other side. The Monitor Merrimac was backed up 5 miles when I went by. As I rounded the curve from 664 to 64, the east side was a parking lot. The radio dj mentioned that the HRBT was undergoing maintenance. Really who had the bright idea to do maintenance on that tunnel on a Friday afternoon before a holiday? Traffic at 3:40pm was backed up 6 and 3/4 miles.

I also started hearing there was an accident around Ft Eustis. From the volume of cars heading west with me, I decided I’d had enough of the interstate for the day. Sleeping Jesse and I hopped off onto rt17, and went up to the Colonial Parkway. What a wonderful ride 🙂

At the York river there was a man flying 10 kites. I wish I had stopped to take a picture. It was a fantastic site.

Jesse and I got back her at 5pm. I am glad I went that way home because it gave me time to calm down and get over myself. Although Mike claims I am the grumpy one this morning. I guess he never thinks he gets grumpy…. It might not help that when he gets smart with me, I throw in his face about making us leave in the dark due to not having AC last Sunday. 🙂

———

Congratulations to a friend we have met through clinic. She is done with treatment and all her scans look great! Please keep praying for her.  We have been very blessed to met their family.

Also October 1, 2011 from Hoss’ Deli in Newport News, there will be a poker run to help a girl fighting Rhabdomyosarcoma. She will be traveling to Boston for part of her treatment. If you can take part in this ride, here is the information: Poker Ru from Hoss’ Deli

The last few days have been interesting. It was very different when small people weren’t involved in riding out hurricanes.

On Friday, Jesse and I were supposed to travel to Norfolk to get her shot so that we could begin the 3rd round of antibody. This shot is given 3 days prior to beginning the antibody to boost her immune system so the antibody will be more effective.

In light of Norfolk evacuating low lying areas and parts of Virginia Beach, I opted to not make the trip.

Yes it would have been a short visit, but one never knows. And it turned out later that day when I flushed Jesse’s lines, I was unable to get a blood return.

On Saturday, we hung around waiting out the hurricane. Luckily we didn’t have the worst of the winds. Around 2:30pm our power went out.

During the first power outage, Chris had to get a haircut. She managed to get gum in her hair. I let Mike cut the gum from her hair so that I didn’t have to hear about cutting her hair. At least she thought it was awesome she was getting a haircut….

Our power returned at 6:30pm. We were able to do a few things, and then it was out again at 10:30pm. Jesse and I had been watching the news. Well I had been watching the news, Jesse had been doing the flop like a fish fight sleep maneuver. When the power went out, this little voice says, “Mommy the power went out. I can’t see myself. I need to see myself.”

My kids are spoiled. This is the first power outage they have ever been through.

When I did Jesse’s flush that day, her blood return was very faint, but there. 🙂

Sunday, Mike worked til 6pm. The girls and I cleaned up our yard and helped some neighbors. Since everyone’s freezer was thawing, we had a cookout.

As we were eating dinner, Mike started in on we can’t stay here with no AC. I’d been watching Jesse’s lines to make sure that her tape didn’t get wet from sweat. She was fine, but Mike raised such a stink that I agreed to relocate.

A relative has a house generator. Mike went down the road to cut it on. I was left to throw everything together in the dark that we’d need. Needless to say we left home without shoes, clothes, food for Maggie, and other items 🙁

Unfortunately down there people where burning a bonfire. The smell was inside their house. We left there for another relative that has electricity.

Today I returned to the house to clean out the fridges. I can’t take a chance of the food being contaminated and making Jesse sick. Mike just called saying the dump was closed and asking me where he could dump the trash.

Well Jesse’s CVL is just like her. Ornery!

For the last two days when I have flushed it and drawn back (mainly out of habit now) it has shot blood out at me. Currently thought the plan is to see our oncologist on Friday, and then decide if she needs to have it replaced.

This morning the girls and I all got a very special treat. (I don’t know if they will let me share the picture, but I will if they do)

CHKD very kindly asked if we’d make a radio spot for 94.9 The Point’s CHKD Radiothon. Chris even got to come along. She was pretty excited. But my how little kids get bored quick, and they were all over the radio station. The DJ, Woo-Woo, was super nice about it. I really hope that Chris didn’t contribute to their computer difficulties.

She did ask me about Mike’s and mine relationship. I goofed that one up. I told her as you well know you never have kids to save a marriage, which we never did anyway. I should have gone with I leave the mushy stuff up to Mike. I don’t really see a difference in our relationship. We’ve always been pretty close. I married my best friend. We do enjoy the time we have together more because of hospital stays separating us.

I’m not just not good with emotions. I have a tendency to want to run from them, except anger… that one seems to be easy to get to and handle… I really don’t think that’s a good sign. Sometimes I think that dealing with Jesse’s medical care is making me afraid to cry or show too much emotion for fear of upsetting the girls and Mike. And I want to stay as positive and upbeat as I can.

They also got to meet a DJ from Z104, Nick.  We had a really good time, and the girls loved the experience. I’m thinking that as much as Chris talks, broadcasting might be a good venue for her.

It dawned on me on the way home I forgot to mention the nurses in PACU and PICU. Dang IT! So many people to thank, and no way to adequately ever say thank you. 🙁

Traffic was great going both ways. Really surprised me.

A few more days of Accutane and we get 2 weeks off! Jesse’s skin is peeling again even though I am dousing her in Aquaphor and lotion (her aunt is even helping with the dousing).  Plus I am noticing the attitude change again. I am not sure if she isn’t sleeping well at night or the Accutane is starting to affect her mood. 4 more rounds of Accutane after this, 3 more rounds of the Antibody, and then praying hard her body fights the last of those bad cells out of there.

Yep it’s not, even though Jesse is smiling.

Jesse and I headed out at 6:30am to clinic for labs. This lab was a fasting lab because they wanted to check her triglyceride level. Being on the Accutane can elevate this level.

When our nurse tried to draw off one of her CVL lines, nothing. She tried an extra flush, no blood. This isn’t a big deal because sediment sometimes settle in the lines. (The big deal is when they don’t flush.) She asked the doctor to order some TPA to break up any sediment in the lines.

When they put the TPA in, it needs to sit for 30 minutes to an hour to break up the sediment. By 10:30am, we were ready to try the for the labs again. Nothing.  With nothing coming from the lines, this means an x-ray and trying TPA again. Our nurse suggested getting the labs from her arm (meaning they would have to stick her… something we don’t usually do because we have the CVL).

Bless her heart and the clinician’s, sticking Jesse was the last thing either wanted to do. In fact the clinician came in the room with an extremely bummed out look on her face, but she did an excellent job. She hit the right spot in the first try and Jesse barely flinched. (Wish she was taking my blood work next Tuesday!)

After the labs were drawn, Jesse and I went down to radiology for an x-ray of her CVL to make sure it was going in the vein. We had to wait 45 minutes before being called back because they were extremely busy.

I am very proud of Jesse because I know she was starving. Not once did she complain about the wait. And when it was time for her x-ray, she sat perfectly and cooperated fully with the technician.  She was really excited to take her “picture”.

We stopped by the cafeteria, grabbed some lunch, and returned to clinic to wait for the results and get more TPA. I was really hoping that maybe this second round of TPA would work and her CVL would give a blood return as it should.

After an hour sitting in her lines, we tried getting a return. Nothing. Then our nurse educator who is also in charge of the antibody commented that we had to practically stand her on her head to get labs in PICU during her second antibody round. This gave me an idea. “Jesse, do downward dog.” (The girls love trying the different positions with me when I try practicing yoga.)

Jesse bent right over. As we were all laughing, our nurse was able to get a blood return. Another nurse said we needed to take a picture of this. So I handed her my phone. Because everyone was laughing, Jesse thought this was great. I have a feeling we’ll never take labs the same way again. But this is also a bad sign.

Our doctor told me they were ordering a fluoroscope to see how liquid was flowing through the CVL into her vein.  During a fluoroscope contrast is injected through her CVL while she lies under a special x-ray machine that takes video of the flow pattern of the contrast.

Jesse happily went down and laid calmly on the table. She wasn’t afraid while the camera was moved in a position to tape the flow. She even started to go to sleep.

It was amazing to see her CVL and watch the flow. Her CVL is definitely not curving down and around in her vein as it did when first placed. Now it is parallel with her clavicle.

After the fluoroscope, Jesse and I returned to clinic. Our doctor explained that everything was flowing in as it should, but there was a clot or the vein wall at the end of her CVL preventing blood draws. He had order some medicine to sit in her lines for 24 hours. Hopefully this will break up any clot if it is there, but he wasn’t very optimistic this would be the case. ( I am getting ready to find out because it has now been 24 hours).

He also had our nurse set up an appointment with the CHKD surgery team because he really thinks Jesse’s line will have to be replaced. This bites the big one because I was hoping the next time Jesse had a surgery would be to remove the CVL. On the other hand, she’ll be getting the CVL put back where it belongs. Changing her tape last night knowing the CVL tip was parallel with her clavicle was a little more nerve racking than normal.

And by the way her triglycerides were 380 (normal is 140), but they won’t put her on medicine unless they reach 500. Her red blood count was 11.2, platelets 219, and ANC was 2045.

So my last post was less than glowing, but I needed to get it out.  Anyone with a 3 year old can tell you they are testing the boundaries… the “terrible two’s” … walk in the park. The 3’s are far more terrorizing for me anyway. And I am human. We all get frustrated with people in our lives from young to old from time to time, and feel the need to vent.  No matter what I do love my girls (and husband) very much.

I also recognize that my daughter doesn’t feel 100%, but my obligation as a parent is not to raise a heathen. I don’t ever want Jesse to feel that she is entitled to anything because she had cancer. I also don’t want her sister to feel that Jesse received different treatment from me than she did. I want both of my girls to realize that no one owns them anything. And if you act less than stellar, well you don’t get rewarded.

I remember one of the biggest things the teaching nurse stressed to me when Jesse was first diagnosed was you must discipline her. I remember thinking at the time, “Duh it brings stability.”  In a life that is now very unstable,   this is a very important constant.

Chris is fine around myself and Mike, but I think she has figured out around grandmas she can get away with showing her tail. This was my fault I should have nipped it in the bud better last night.

I will have to say that I think Jesse is feeling much better today. She actually didn’t sit in her room and scream for me to come get her for 45 minutes when she woke up (like it has worked the other mornings). She came in the playroom on her own ( I guess when we out grow toys, we’ll have to call this the den?).

She has been smiling and laughing all morning. Only one episode of “I can’t walk,” and when I went off and left her she picked herself up and trotted after me. She’s just trying to see what she can get away with.  Silly girl she should have tried playing that game with her daddy (although he wasn’t buying into it last night either).

Tomorrow we go to clinic to check her triglyceride levels. This means nothing to eat after 12am (I am going with 8pm because I want them to have as close to a 12 hour fasting time as we can pull off). The reason to check this is because they were a little high last time. This is a likely side effect of Accutane, which is the drug helping to mature her undetermined cancer cells.

What a day. What a weekend.

Not sure if the antibody and il-2 combination have turned Jesse bipolar or she’s just 3.

We came home Friday evening, which was great because we missed the traffic. Jesse stayed awake until 10pm. She napped earlier in the day… And that usually equals a later bed time.

Saturday, the girls played around the house. Jesse screaming and crying most of the day. Also claiming that she couldn’t walk because her legs hurt, then I’d catch her running… So not sure of the truth there.

Sunday, Mike had to work. And Jesse pulled the same stunt on Sunday. 

I don’t know if this bipolar attitude comes from feeling crappy from the il-2 and antibody, being 3, or the attention from being the hospital for the last two weeks ( with a weekend off in between) and she’s coming down from the people high.

Monday in clinic her behavior was embarrassing. I am still really disgusted with her. Don’t worry she knows because she didn’t want to go home with me. All I was going to do was put her in her bed room for the remainder of the day. You can’t act right, you don’t deserve to be in public.

I really thought that some of this attitude stemmed from needing blood, but her counts are fantastic. Red blood 10.2, platelets 136, and ANC 2211.

But the more I think about it, Chris acted this way at 3, and I felt the same level of frustration and anger then. Chris spent a lot of time in her room, and she has turned out to be a great kid. Sure we have our moments, but she does listen.

I just need to get Jesse to learn that screaming and crying to get your way will not work.

This morning we started at 7:30am screaming for me to carry her out of bed. There is nothing wrong with her legs, nothing. She runs when she wants. She might be a little stiff in the morning, but she needs to get moving and work that out. 45 minutes she screamed. Finally she walked out of her room.

Later on she began screaming for something else. I don’t even remember now. I told her when she could tell me nicely, I’d consider it.

All of this is frustrating and disruptive. I have work that needs to be done, sleep that needs to be gotten, and exercise to catch up on. 

It’s going to be a tough few months, but eventually through consistent consequences she will learn  to behave as she should. Plus by the end of December maybe all the medicines will stop affecting her mood and only affect the tumor. 

I did talk with a nurse who mentioned that the others who went through antibody treatment were a little moody. And I am sure that feeling like you have the flu for a few weeks every month plus the anger Accutane brings out just doesn’t help one’s mental state especially at an age where you can’t really figure out what is going on. 

And speaking of Accutane, Jesse is less than thrilled I slather her in Aquaphore every night, but I can’t have those sores all over her again. Plus I am sure that me wanting to put sun blocker on her every time she steps outside isn’t going to help the anger level either.

Ah the terrible threes… 

My husband Mike wrote this during his recent stay with Jesse in PICU.

I asked him if I could share his words, and he told me that was his intention, but wasn’t sure how to get it on the blog. He wanted to share his view point. I’m really glad that he has wanted to do this.

———-

After July  2008, my goal as a father was to be the best DADDY I could be.  I have 2 precious little girls that I adore more than a DADDY can.  They are my angels!  I feel that I am the luckiest DADDY in the world.  

My wife, who is also my best friend, is the most strong willed person I know.  Most husbands are portrayed as the ROCK of the family, but in my family my wife is the ROCK!  She carries so much on her shoulders with the utmost respect.  

On November 2, 2010 both of our shoulders were put to the test.  My 2 year old “baby angel” was diagnosed with cancer.  My first thought when the doctor told us was that my “baby angel” was going to die.  

My tears would not stop.  I remember laying with “baby angel” in her hospital bed and her looking at me with those big brown eyes and asking me “Daddy, why are you crying?”  For the first time, I had no answer for her.  As I lay there the thoughts were running through my head to be strong for my ROCK.

The next thing I knew she was holding me, assuring me that we were going to get through this.  That night we stayed awake trying to figure out why this happened.  Again, I had no answers.  

Once we knew how the whole treatment process was going to work, my ROCK sprang into action!  She began to lead our family into the next stage of our lives.

The first time I put my “baby angel” in her car seat that Monday morning for her first chemo treatment, she saw me cry for the second time.  This time my “baby angel” did not ask me why, she pulled me close to her and said “Daddy, please don’t cry I’m going to be ok!”  Then she kissed me on the cheek and said “I love you Daddy!”  

At that moment an unexplainable peace came over me.  I thought how blessed I was to know that my “baby angel” displayed the same strengths and will as my ROCK!  

That night after work, I went home to be with my first “little angel”.  I could tell she was struggling with what was going on, so I asked her if she was ok?  She then looked at me with the most concerned look I’ve ever seen in my life and asked “Daddy, is my little sister going to die?”  I CRUMBLED!  I’ve never fought so hard to hold back my emotions.  All I could do was hug her.  That was a question I was too scared to answer.

Over the next months seeing the strength that both my “angels” had developed, encouraged me greatly.  Whether witnessing “baby angel” handle another treatment or watching my “little angel” cope with the fact that her family is apart.  

One particular night before another hospital stay I saw “baby angel” consoling her older sister and saying “It’s ok sissy, I’ll be back home in a week!”  Although my “baby angel” weighs heavy on my heart, it is more strenuous when my family is apart.

We’ve learned as a family to take one day at a time and enjoy the simple moments that were once taken for granted.  Even if it is just a weekend, it feels great to see my “angels” together, whether they are bickering or playing, it doesn’t matter.  “Through Daddy’s Eyes” they will always be my “angels”!  

We are now in the final stages of “baby angel’s” treatments.  I would be lying if I said I will not continue to worry after all of this stage in our lives is complete.  

The truth is that this is something my family will always live with!  Even though this year has been the hardest test my family has endured, there is still a smile on my face every night we are home together. 

This cancer that my “baby angel” has is feared by all, but “Through Daddy’s Eyes” has created a family bond that absolutely NOTHING can destroy!  Thank you to my ROCK for being the most solid thing in my life! I LOVE YOU!!