We have been very busy these last three weeks.
Jesse and I have made the clinic trip at least once a week. During the 2nd week visit, I told her oncologist I was over dealing with residents when he told me that a resident was going to see Jesse first in clinic. He reassured me that this resident was really good, and lucky for my sanity, he was right. I think that she will do very well when she goes for her fellowship at St Jude.
I also told him that visit I was over all of this, but that I also realized that I will never be able to be “done.” As this year has progressed, and from reading other stories… I no longer believe in the term “Cancer Free.” There is always one cell or gene lurking in the corner. I just really hope that God does His magic and keeps those cells and/or genes in check.
During this time I have also had to deal with minor drama in Christine’s life. She was rewarded for negative behavior by someone outside of our situation. I was so mad that day it wasn’t even funny, but I talked with the person. And we now have an understanding that if she whines and cries, she doesn’t get a treat if she doesn’t whine and cry. I expect her not to whine and cry. I hate having to deal with these sorts of things. That day was sadly hilarious around our house. I was so stressed out over meeting with the person, that I didn’t notice Jesse had shut Maggie in Chris’ room for an hour and half. Then I managed to lock myself out of the house.
I also was accused of kidnapping Jesse during this time. The lady meant very well. Ferfer and I had ventured to Sam’s Club with the girls. Since Jesse is still vulnerable in my book, I put a mask on her. While her sister and I went to the restroom, Jesse and Ferfer browsed the pharmacy area. Then Ferfer and I changed places. While we were waiting, a lady walked towards me, looking at me strangely. I figured that I had my cart in her way. I moved the cart and apologized, but instead she asked me if she had seen me with that girl just a moment ago.
I explained that no, she had been with her great aunt. The lady exclaimed, “Oh thank goodness, I was worried she had been taken.” By this time Ferfer had returned, we thanked the lady for looking out for Jesse. It was wonderful of her to be concerned for Jesse 🙂
Last Friday, we spent several hours in clinic. Jesse’s IVIG level was low. IVIG is a blood product that helps fight infection. In Jesse’s case, she only needed one small bottle. For some older kids, they can need 2 or more bottles. But the infusion rate is so slow that it takes 2.5 hours for the infusion. We also needed 20ccs of urine from her…. and she has the tendency to impersonate camels…
The nurse gave her 500mls of saline at a 250ml an hour infusion rate… you want to know when it all came out? Sometime after midnight in Mike’s and my bed.
Jesse stayed up and watched the World Series that night. She had napped the entire ride home. Chris was devastated to find Jesse sleeping with us. The funny thing is that Chris is always in our bed by 2am… Jesse rarely sleeps with us. She sleeps in her bed all night. But I understand that Chris is very scared she is going to miss us leaving. And she is petrified that we will leave her home alone.
This weekend we didn’t leave the house. It was too cold in my book. I keep seeing blue, warm Caribbean water, but not until after we are a ways out from this last year. I am skid-dish to be too far from CHKD.
Today, Monday, I dressed Jesse in her ladybug costume and headed on down. We arrived late because traffic was really bad, but other than that we have had a stellar day.
When we walked into clinic, we met a hot dog, race car driver, taco, southern belle, a nurse being another nurse, a corn cobb, Elvis (her doctor… more on Jesse’s reaction later), Heinz Ward, Hawiian dancer (loved her flowers, they where beautiful.), Native American, WV Coal Miner, and many others. They had all dressed to represent a state, and where saying, “I’m an Alien from Roswell, Arizona.” Jesse heard this so much that she started saying, “I’m a ladybug from outer space.”
As for her doctor, he asked her when she first saw him if he knew who she was. She replied, “Dr Lowe.” He asked her for a hug, and she replied no thanks. Jesse does the same thing with the Chickfila Cow. It’s the attitude of “I like you, but stay over there.”
We drew her labs. Her lines gave us a fit. I really think that low pressure reaks havoc, but I don’t know. We meet a little girl in clinic that has had 3 CVLs put in and replaced since March! Scary! But this little girl looked great.
We met another child who has fought a Wilms tumor 4 times. It is in her lungs, and they won’t transplant and can’t operate. She is on a clinic trial. Her mom made the comment to me that she is exhausted. I can only barely image how exhausted that family must really be. She talked about often telling her child that they just had to do this.
It made me think of Jesse and my ride in this morning. Jesse said several times that she didn’t want to stay. That she wanted to go home today. I kept telling her that we have to do this. And I asked her if whining and crying about it got her anywhere. She is so smart. She knows that whining and crying doesn’t. I also told her that we do this with a smile on our faces, because it is not the nurses’ or doctors’ faults that this is happening. And treating them like dirt gets us know where.
We met with the Hawiian dancer doctor and the corn cobb resident. (Each oncologist has their special days in clinic. If we come on days that aren’t Dr Lowe’s, then we see one of the others, who are great too 🙂 ) I talked with them about Jesse’s shots. She is getting GMCSF for the next 10 days. And strangely since after the 3rd round of antibody, the shot causes welts on her legs. She doesn’t complain about them, but they make me nervous. The doctor thinks that she is having a slight reaction. One that being on benedryl while we are here getting the antibody will cover up…
Around 11:30, we had a parade of costumes come through clinic. Channel 13, WVEC.com was there to tape it. They included Jesse in their news cast. Mike noticed they said she was 2 (I told him eh she is barely 3 🙂 ). We were so excited to see all of our child life friends. Although Gumby had Jesse slightly concerned… She kept her eyes on Gumby.
By 12pm our room in PICU was ready. Upstairs the PICU staff made a huge fuss over Jesse and her ladybug costume. I don’t know if I will ever get this kid grounded again.
At 3:30pm Jesse began the antibody. Thank God no reactions, and it has been very quiet. She stayed awake through 2 rounds of benedryl and the morphine bolus. She decided at 7: 45pm, she was finally tired enough to sleep.
Prior to her going to bed, the nurse and child life staff came by with trick or treat goodies. Jesse had a blast. And tonight 2 nurses from 8B have come down to say hello. I really really appreciate that they came down to see her. We are very blessed to know so many wonderful, caring people.
Also last week, an article with Jesse and about clinic trials was published. I have included the link below. We are very honored that Jesse was included in the article. It is on page 19.