Having a kid with cancer is for the birds.

Jesse has been complaining about pain behind her knee since Tuesday. Normally we’d chalk it up to growling pains and move on… Normally.

Instead we go with that first while wondering in the back of our minds… Oh crap we are off treatment, please just let it be a growing pain.

Then yesterday and today she said her stomach hurt, and she has become very very picky on what she will eat. In fact she ate no lunch today.

Normally we’d go with potty training, fear of #2, and trying to control it.  But in the back of our minds is the nagging question of is she constipated again like she was before she was diagnosed. So I slipped her some Miralax.

Then she told me she was tired and wanted to take a nap. This is a child that doesn’t nap. My anxiety level climbed through the roof.

I debated calling her doctor, but felt that he would say let’s wait to see her scans later in April. And I completely understand. He would probably tell me to give her Miralax and see if that improves her stomach.

She did finally relieve her stomach pain this afternoon, but quite frankly my nerves are shot. I guess with time all of this will be easier to deal with.

I have also made her some tea, hoping that by getting her to drink more the leg pain will stop. I had been trying to switch her to water, but she doesn’t drink enough I feel. ( She still pees at least 7 times a day.)

Their dad will be home from work soon, and I am going for a run.

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April 1st Chili’s in Williamsburg helps conquer childhood cancer. Bring in the flyer above and 15% of your meal will be donated to help fight childhood cancer through St Baldrick’s, the #1 private funder of childhood cancer research in the USA.

They have funded several research studies at CHKD, and I feel this is a great way to tell her doctors thank you. Plus I asked CHKD how I could raise funds for the oncologists, and they suggested St Baldrick’s.

If you can’t make it, please consider donating to the link above. $1 will go a long away to helping researchers find ways to stop and cure cancer. Thank you!

Friday morning Jesse got a really huge treat. She was invited by her doctor to help with a St Baldrick’s head shave on the Hampton Roads show.

Chris goes bald for St. Baldrick’s: wavy.com

Then I took Jesse back home to Williamsburg, and took off to run the Towne Bank 8k in Va Beach as part of the Shamrock Marathon.

What a blast 🙂

Jesse had a great time hanging out with her dad and sister back home. They “camped out” in the living room until 9:30 when Jesse asked to go to bed.

Enjoy the video. We are really thankfully that Jesse was invited to participate.

Is the first thing that the urologist said to me as she walked in the room after keeping Jesse and I waiting an hour and half. By the end of our 30 minutes with her I felt the same as the day Jesse was diagnosed.

Our day started great. Jesse and I were invited to make a spot for 92-9 the Wave’s CHKD radiothon on June 1st. Jesse enjoyed visiting with the receptionist, who was a very sweet grandmother of 4 boys. In the studio Jesse refused to talk on the microphone. She really just wanted to hold it.

We left The Wave and headed for Jesse’s ultrasound at CHKD. Jesse did great. She laid there patiently while the technician ran the probe over her stomach and back. I could see the ultrasound screen and the enlarged left kidney.

After the ultrasound, Jesse and I grabbed some lunch. Then head up to urology a half hour early. At 1pm, a nurse took us back. Jesse was weighed: 13.3kg! (over 29lbs).

Then we began waiting. On the door was a sign stating the doctor would not see you if you were on your phone or texting. My reply to this is then cut your patient’s wait times down. Not like we don’t have work or other things we need to do.

When the urologist finally came in, she started by telling me that Jesse’s condition was bad. Then she began harping on prognosis. We have never been given a prognosis. How can you predict the future anyway? And in Jesse’s case, what would I do differently? If a doctor told me that she was going to die no matter what, I will still do everything that I have already done and more.

“Does she have any back pain or constipation?” Which honestly Jesse doesn’t. I have only had her complain about her back once. She has complained about her stomach, but that is after she has held her number 2 too long, and remedied after she goes to the bathroom.

Then she started in on why we didn’t have more of the tumor removed. I explained to her that Mike and I did a list of pros and cons, and felt the cons were too risky. She looked at me in disbelief.

Her next stop on the “happy” train was to carry on about why we hadn’t seen her before. Jesse’s left kidney was the factor tipping us off to her having cancer. Then she says to me after I explain all this, “Well them not sending you to see me tells me they were more concerned about the cancer.” Well yes. It’s cancer Stage 3.

After all this she gives me our options. We can either stick a tube out of Jesse’s back with a bag or place a stint up her bladder through the urter.

I asked her at this point how she felt about those options. Her reply was to tell me it wasn’t hers to feel about.

Ok, let me rephrase: “What would you do if this was your child?”

I hit a nerve with that question without meaning to. I asked the question as a parent looking to an expert for advice. She took it as I thought she didn’t understand where I was coming from.

She proceeds to tell me that her husband is dying from a neurologically disorder that doctors can’t diagnosis and she knows how I feel. I am really sorry that her husband is dying, but I didn’t ask that question to get her to sympathize with me. I asked to get her expert opinion.

Then she tells me that she loves her husband, but loves her son more and would do the stint. Even though her husband would rather they wait until it got so bad he needed the tube out the back.

I would rather do the stint anyway. Having the tube going out of her body opens her up for infection more than having a stint inside her body.

She did tell me that Jesse’s left kidney is a Grade 4 swell (the highest) and functioning at 30%. Normally the kidney should be operating at 50%.

Her right kidney is operating at 70% and has a Grade 1 swell (the next to lowest grade).

She also read me the results of the kidney flow test Jesse had done February 10. Basically the left kidney didn’t empty without the help of lasiks.

Then she discussed that Jesse’s stint will be good only for 10 to 12 weeks. At that point it will be removed or replaced. All I could think was great now every 10 to 12 weeks she has to undergo surgery.

She then left the room to get paper work. While she was gone, I had a question pop in my head about whether Jesse could swim. When I asked the nurse and she asked the doctor, the doctor acted like the biggest inconvenience.

Needless to say, I was pretty unhappy and upset when I left the urologist. I was so upset that I went and found Jesse’s oncology doctor, who the urologist ran through the ringer because she wasn’t included sooner.

God Bless our oncology doctor. Jesse was not on his schedule, but he took time to come out and talk with me about what the urologist said. I really appreciate him taking the time to talk with me, and to tell me that he research more information about the stints.

I think what is most painful today is the reminder that this is cancer and Jesse will never be free of it’s grasp. And it reiterates that research is vitally important because Jesse falls into the 62% of childhood cancer fighters who will develop other medical problems.

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And with that I will be shaving my head again from childhood cancer research. There has to be a true cure out there. Click here to see my page on St Baldrick’s or to be a hero for conquering childhood cancer too

A little voice sadly proclaimed from the back seat Friday morning at 6:15am. “Why?” I asked, “we’ll be home tonight.” “Oh Okay.”

Jesse and I were headed to clinic to have a checkup. By the time I was at the Lightfoot exit on 64, I realized I had forgotten a really important letter. So we headed back to the house to get it. Luckily I have severe being late issues and we had extra time.

This was Jesse’s first clinic where they had to stick a needle in her arm for blood. I warned her on the ride that this would take place. She did scream when it was done, but quickly got over it. I forgot to get numbing cream from our clinician. Sigh. Hopefully I will remember to drop in and ask for it when we go down on the 15th to meet with urology.

Jesse acted lost in clinic today. It has been a month since she was there. Her nurse and I talked about the fact the little guys quickly forget.

Her numbers came back great. 12.9 for her red blood and ANC of about 3000.

Her doctor and I talked about her meeting with urology on the 15th. They want an ultrasound because they want to see the size of the kidney. He explained that he doesn’t use ultrasounds because unfortunately they don’t show him what he needs to see. And I totally agree. We have experienced ultrasound around Jesse’s kidney, and it didn’t show anything except that her ureter was obstructed for some reason. (We later found out the reason)

I am curious to see what the ultrasound shows this time.

We left clinic around 10, making 1 stop on the way home at Target.

Jesse wanted a doll in the checkout lane I wouldn’t let her have. Stomping her foot she proclaimed, “I am having a bad day.” I said to her, “Honey this isn’t even one of your worst days.”

I’m glad that she can’t remember the stem cell transplant days. Those were by far some of her worst days.

We did what normal sick people do… whoa. Exciting and scary at the same time, and we didn’t have to drive 104 miles round trip. (I am not complaining because there are many people out there that travel much further than we do)

Tonight at 5pm, Jesse started screaming that her left ear hurt. I felt along her neck and noticed two little lumps. We decided to take Jesse to Urgent Care here in town.

We arrived at 6:10pm to a packed waiting room. I made Jesse wear a mask the entire time. No need to get something else. A friend I went to high school works there, and she loaded Jesse up with stickers. Plus sprayed the room down with Lysol and made sure Jesse had a clean pulse ox. I really really appreciate her doing that 🙂

By the time we were placed in an exam room Jesse was hopping all over the place. I know they thought I was nuts for bringing her in, until the nurse practitioner stuck the otoscope  in Jesse’s left ear.

I had to wrap Jesse in a bear hug for her to hold still. Upon looking in the right and feeling Jesse’s neck, the nurse was pretty sure it was an ear infection. So we have azithromycin to help treat the infection. I have to giggle… get rid of one medicine and we find a way to bring in a new one.

Luckily Jesse hasn’t run a fever, but she can have Tylenol for the pain. And what is really wild to me is she can have mortin. I don’t plan on giving her any… but it’s wild to think we can have that again now that her CVL is gone.

It was also wild to be treated where “normal” sick people get treated. The nurse apologized for the two hours we were there. All I could think was “Lady this is nothing! If she had the CVL I would have had a 1 hour drive to CHKD, followed by unknown wait in the ER, with an hour drive home.” This saved me an hour and at least 80 miles.

It was scary too. It’s hard to have this kid come down with something, because you always think is this the precursor… is her cancer coming back? I don’t think it is, not the way she hopped around the room and played.

I do worry a little that this is the beginning of ear infections and potentially having to have ear tubes again.

We heard yesterday from oncology about Jesse’s kidney (I know I am behind… been busy working 🙂 )

Her right kidney flows great. In the left kidney, the nuclear medicine went through it partially hung until the lasiks kicked in. In the doctors’ minds this is not a blockage, and they feel that her left kidney is functioning great.

I did ask extensively about that hang, but they assured me they felt this was not anything to be concerned about.

I am really glad that Jesse will not have to undergo surgery. I am really nervous when she comes off the bactrium because we won’t have that added layer of protection.

Our other exciting news: Jesse is finished with Vfend! This is an antifungal medicine she had been taking since stem cell transplant because they saw cloudiness in her lungs on the CT Scan. The last time we had the prescription filled it was $400. My insurance changed, prior to that it was $250 for a month’s supply. And I am thankful to the wonderful people who have donated money to Jesse’s care, we didn’t have to pay every time. (I did pay for ones that I could… I wanted to save as much of the money as could for Jesse’s hospital stays and to pay for future tests.)

So now Jesse only takes cyrohepatdine (an appetite increaser) every day and bactrium on the weekends. The cyrphepatdine will stop when she gains acceptable weight ( I have a feeling that she might be like her oldest uncle… he has never been overweight… no matter what he eats). The bactrium will be taken through June at least.

Not much snow, but enough for the girls to have a blast. Last night when it started falling, they started begging to go out and play. I did make them wait until this morning.

On the left is a picture of Jesse’s snow angel. She asked to make one last night, along with a snowman. Sadly our snow was too fine to really stick together for a snowman.

They had a blast sledding down the hill, making snow angels, and being able to really play outside. Last year when it snowed, Jesse was undergoing chemo. Due to wanting to keep her safe, we kept the girls inside.

Enjoy our videos below of playing on the Hall Hill (This perfect size hill in front of the house), and the girls trying to say Overalls. Who knew that compound words where so difficult….

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Sledding on Hall Hill

The Girls Try to Say Overalls

Right now I am so angry from driving home it’s not even funny. It took us 2 hours to get through the HRB Tunnel. The other option tunnel was backed up 13 miles. In Newport News, some lady tried to annihilate us on our way home tonight, then has the nerve to glare at me. Really? At Jefferson, two cars decided to park in driving lanes. Luckily I was quick enough to sail around them.  Then some one was driving under the speed limit prior to our exit. I am so glad that they haven’t been sitting in traffic for 3 hours and didn’t have a kid that has nothing to eat for almost 24 hours, who was screaming that she had to pee. So I was bad and went around them and got off. My patience is totally zapped at this point. And yes I am embarrassed that I allowed myself to get to get so frustrated, which is even more frustrating. One day I will not let the interstate get to me…

The day started out great even with Jesse not being able to eat breakfast or lunch.

At 7:30am, I heard this little voice pronounce from her bedroom, “Yeah I am going to the hospital!” Immediately she wanted to leave. I had to explain that we couldn’t because we needed to put her sister on the bus.

Poor Jesse had to watch Chris eat breakfast (I had to feed her before I sent her to school) without asking for food once. It amazes me the patience she has when she knows she can’t eat due to a procedure.

We headed out around 10am, making a stop at Running etc in Ghent. I have been dealing with shin splints lately. What an awesome place! Everyone was extremely friendly to Jesse. And it turns out that we missed her clinic nurse by seconds, and she got to see one of the nurses from 8B.

The gentlemen that helped me was great and gave me some exercises to try building up my shin muscles. I really appreciate his time and honesty. And when I need new shoes I think I wait until I am going to CHKD to stop in.

Jesse and I left Running Etc and headed to CHKD. We decided to swing by and visit our friends on 8B. Jesse had a blast walking around lifting her shirt and announcing, “No Tubies!”

Then we headed down to radiology to check in for Jesse’s kidney test. The minute we hit the door, Jesse kept asking if it was her turn. She was very ready to have her picture taken even with me explaining they were going to have to stick her for an IV.

While we were waiting they took Jesse’s weight: 12.3kg. She is eating I swear! At this rate will be taking peractin for another year to try and increase her appetite, which I thought was pretty healthy…

She did scream when they inserted the IV, but didn’t move or jerk away. And the lady that put it in was fantastic! She got it in on the first try. (I greatly appreciate that they didn’t call the VAT Team.) We did have extra hands just in case because was the first time sedation every had to insert an IV for her. The lady told me later that she really didn’t want to have to stick Jesse, but as I had told Jesse: “This is what has to be done.”

Because Jesse was very brave while they inserted the IV, sedation gave her a white dress up dress. They even let her wear it to take her picture in.

Around 2pm, they gave Jesse precedex so she would sleep. (It took 91mmgs over an hour for them to complete the test).

The test Jesse had involved putting nuclear medicine in the IV, then watching with a special camera how her kidneys filled and emptied. Of course this meant a catheter at the other end.  And we have had some screaming while using the bathroom tonight.

The main concern was the left kidney. This kidney was the one which the tumor was choking, and the one to signal us Jesse was having trouble pre cancer diagnosis. Due to this experience, the left kidney is still misshapen and there is concern of how it is functioning. Today’s test will give us an idea.

The nurse told me at 3:17pm the precedex was turned off. But due to the amount she received it was 4pm before Jesse woke up. Of course she woke up screaming that she wanted to have her picture taken, and it took some conveniencing  on my part that it was already done.

My favorite sedation doctor (and I don’t mean that sarcastically at all, I absolutely love it when this lady is working. She is the head of the ER, and the best doctor I have met outside of Hemoc/ Oncology clinic.) told me that she really thinks Jesse could have done that test awake if the catheter was not involved. She also told me that when we have Jesse’s CT scan to request no sedation. She really feels that Jesse can do it. So when Jesse has her scans, I am going to try it. I really hope she is there.

At 4:30pm, Jesse and I headed out to begin the fun of trying to get home… it only took 2 hours longer than normal 🙂

I do not know the results of the test at this point. I am a little concerned because the technician asked me if Jesse had every had kidney surgery, which she has not. But her question might have been due to wanting to know why we were doing the test, and it was easier to ask me than to wade through Jesse’s huge chart. (I am okay with that. Anything I can do to make their jobs easier and more efficient is fine with me 🙂 )

Saturday morning I woke up and decided I was over diapers. When I first told Jesse last Saturday that her diaper days were over, she pitched a fit. Her diaper had become her security blanket in a strange way.

But I stuck to my guns. She has had a few accidents this week, but transitioning to panties wasn’t as tough as I though it would be. She’s been ready for awhile. Now we need to work on getting her out of them at night. That is going to take inconveniencing her dad to stop giving her water at night in her bedroom. I can hear his point right now: “But she needs to keep drinking to keep flushing the kidneys.” And yes she does, but we are not buying another box of diapers after this box is gone.

Last night the Vietnam Veterans invited us to dinner and gave Jesse a gift to help pay for her future scans. We really appreciate their generosity. Jesse and Chris had a blast meeting everyone. I am always amazed at the ease they have with introducing themselves and just being around new people. Sometimes it severely freaks me out too. These two don’t know a stranger.

The rest of the week has been very quiet. Christine came down with strep throat last week, but luckily Jesse hasn’t picked that up.  I have been training to run an 8k in March.

I haven’t heard yet about Jesse’s upcoming kidney scans.  From my previous experience with urology, this might take some time for her to be fit into their schedule.

Jesse is eating really well. In fact for lunch today she ate her first tuna sandwich. Her father was concerned that it might make her sick, but so far so good. And she loved it. I am working with her on the whining. We been having some trouble with that and listening. But these are probably normal 3 year old kid issues.

I did see yesterday that ABC News was reporting a study has found children requiring anesthesia for multiple procedures are more likely to develop ADHD.  Something for us to keep an eye on.

Hope everyone has a safe weekend.

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We are working on finding a venue for St Baldrick’s. I will definitely update when we have it arranged 🙂 Thank you!

Today we celebrate the end of Jesse’s treatment in clinic with her receiving a medal from the Baltimore Half Marathon (thank you Medals4Mettle.org), a “Way To Go!” balloon, and a t-shirts signed by every one.  “Wow that’s awesome!” most people will think, and yes it is, but its not over. Jesse is not completely 100% cured. She will not be NED or “Cancer-free.” I absolutely hate those terms because they are delusional. We are not yet at the point where we can see every single cell and know which cell is going rogue.

However we had expected this as the outcome. When the surgery was decided to be too great a risk, we knew then that Jesse would be living with this tumor forever. Unless by some miracle of God her body removes it. Does this mean it could grow again? Yes. In the future her scans might show growth of that tumor. Could it reappear somewhere else? Yes. This is cancer.

But she went through all this treatment?! Yes she did. She did great. She was able to receive all the treatment.

Are the doctors happy with the outcome? Yes. Surgery wasn’t really an option because of the position of the tumor. They are very pleased she received all her treatment and is still happy to come to the hospital.

What is the size of the tumor? Can’t really say. It wraps and curves around in her body below her kidneys.

What will you do now? Jesse will get CT scans every 3 months below her neck. I am pushing for at least a scan of her head at some point in there. She will have her urine checked to watch the level of proteins that signal cancer. Since the tumor is there she will always have levels of the proteins present. If that level rises, we will have more scans to see what is going on. Her blood level will be checked too.

That’s it?! Yep that’s it. This is the best that research can provide us at this time. We need more research. I could scream that line over and over again. Research, we need more research! But inevitably someone would yell back: “Need more funding for more research!”

What about her kidney? Yes that poor kidney. It’s still inflated. In the next two weeks we will either have an ultrasound or a VCUG (they send contrast up her bladder and see how it back flows into the kidney, meaning another catheter for Jesse to endure.). If  flow to the kidney isn’t as it should be, then she might have a surgery to insert stints to keep the ureters open. I am not sure if we will be placing stints on the left side and the right side, or just the left. I might push for the right side to be done too since they are already in there. We’ll see.

With the kidney being inflated, what about bacteria? Jesse will remain on bactrium for another 6 months to act as a prophylaxis.

What about her spine where the radiation hit? The discs will probably not grow as they should. Therefore stunting Jesse’s adult height by about an inch. She might have some degeneration of the spinal discs that were directly hit over time.  We’ll just have to wait and see.

What about her weight? 12kg today (26.45lbs) She will remain on peractin until she reaches a weight closer to where she should be. I am not sure what that weight is currently.

What if she gets a fever? For the next month and half we call oncology, after that our regular pediatrician. And her symptoms will also play a big part in who we call. If she complains about her kidney, we call clinic. If she complains about her ears, we call our pediatrician.

How do you feel about this? I accept that this is what it is. Do I like it? no, I think it stinks. But Mike and I are going to continue to raise Jesse as if she doesn’t have anything wrong with her. She will be disciplined the same as her sister, and we will have the same behavioral expectations for her that we have had all along. Just because she has this tumor doesn’t give her license to grow up being a heathen, no matter what the outcome is.

What are you going to do now? Go on with life.  Help raise money for research. Send Jesse to school beginning in the fall once she has begun getting her immunizations back. Take vacations. Be a family.  Get on each others nerves every once in awhile. 🙂

This makes research all the more important to me.  Last year I shaved my head for St Baldrick’s to raise funds for cancer research. I will be shaving my head again this year. We are working on getting everything planned for our St Baldrick’s event in Williamsburg. I will post more as we get things finalized.

I don’t expect a cure will be found for Jesse, but in my lifetime I would love to hear them say we have really and truly found the cure for cancer. No child or adult will have to die this way.  If they did find a cure for Jesse and everyone else fighting right now to live, well then I would be beyond ecstatic. And honestly I won’t stop praying for that to become reality.

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St Baldricks.org is an organization raising funds for childhood cancer research. Please feel free to visit their site and learn more about the great things they are doing.