July 9 – 13 and Passing

July 9, 2015

Jesse and I arrived in Richmond at 8:45am. The flight was luckily uneventful.

She spent the day cuddling with her dad. And she kept saying she was so happy to be home.

July 10, 2015

In the morning, all 4 of us headed to clinic. The discussion had been to start more chemo, but we were not sure.

I had with me all the images because Seattle could not email those to CHKD. And even though many hospitals are moving to the same computer system, they often can’t transfer data between them.

After looking at the scans, we met with the doctor in a separate room. I feel for the doctors and nurses in these fields. And I am sure it never gets easier.

From the scans, Jesse has tumor in her bone. It sounds like around her spine at L4, which would explain the constant pain she is having. No matter how many pain meds we give that back pain doesn’t go away. (I talked with my brother, and it is very hard/ impossible to touch bone pain.)

There is also tumor in the bone marrow samples taken from each side of her hips. And one side is almost completely just neuroblastoma. This is concerning too because blood cells (red, white, & platelets) are made by the bone marrow. With the neuroblastoma replacing those cells it is hard to know if her ANC and platelets will recover. Or if she will need more transfusions to stay comfortable.

The doctor was amazed she is not complaining of more pain because of the extensiviness of the cancer in her body. And I honestly don’t know the true extensivness. Do I want to? Not really. At this point, what is it going to change?

As for doing more chemo, the doctor said it would be futile. He did say he would do that if we wanted. But we do not see a reason to prolong any torture. And Jesse was 5 days off chemo on Friday. Her ANC was 176 (normal range is 1500 to 8000).

I did aske them to test her bilirubin level. Your normal range is 0.3 to 1.2. On Monday, Jesse was 4.8. Wednesday – 6.9. Friday – over 11. Her eyes are yellow, and so is her skin. With the bilirubin climbing as it is, the doctor said she could experience pain. Or she could fall asleep never to wake up because her liver is not removing toxicins as it should. She will also more than likely expereince confusion. And at some point she will stop wanting to eat and drink.

We decided to give her a platelet transfusion, which she needed, and let us go home. We will return to clinic on Tuesday to meet with our regular doctor, who has been on vacation (and even from vacation very involoved in what has been happening).

While Mike and I were talking to the doctor, our social worker brought crafts for the girls to do. They made hand prints, thumb prints, did stamping, and had a good time with her. She has alwyas been wonderful about coming in to see Jesse and even taking time to play with her.

Jesse is struggling with this, as we all are. She doesn’t want to die. She wants to stay and have fun with her sister and friends. And she has worried a great deal about them. She asked what Chris will do without a sister? And who will be Landan’s girlfriend? She has also asked me if there are toys in heaven, and if she can come back to visit.

On Monday, Riverside has agreed to send a nurse to our home. We are very thankful to the Williamsburg Hospice House and CHKD for coordinating that. And we are thankful that even though Riverside doesn’t normally help kids, they will make an exception for Jesse.

Sadly on the Peninsula there are very few nursing agency who deal with pediatrics. And the one company I had talked to before the woman was so rude it wasn’t even funny. Talking to me as if I had no clue of how to care for Jesse.

Thank you Holly and Abbi for the Barbie.

July 11 – 12, 2015

On Saturday, Jesse wanted to sit in the playroom. Since she was feeling good, we opted to give some of the family a chance to see her. Her pain did increase, and I moved her from 1/2 a Fentanyl patch to a full one.

Sunday, she wanted to ride in the wheelchair around the neighborhood. She wanted to stop by her great grandmother’s house. And later asked for McDonalds.

Thank you Tommie, Debbie, Hope, Hillary, Haley, Haven, Tommie, Holden, and Tucker for the blind bags and blackberries. Thank you Evelyn and Dale for the items from Lancaster. Thank you Mom, Louise Marie, Nancy, Anthoy, Allison, and Joseph for the Littlest Pet Shops. Thank you Mt Pleasant Vacation Bible School and Earl for the help. Thank you Robert for the help. Thank you Caryl for the red and pink hat.

Thank you Melinda and Wendy for all that you do.

July 13, 2015

Today she is up playing on her ipod with Landan. After awhile I noticed she was in the floor playing with Chris and Emiliegh and their doll house. I’m glad they are having time together.

She is stressing about meeting the nurse because she is new. Right now Jesse has no interest in meeting new people or seeing people she has only seen once or twice and barely in last year. And we are trying to keep life normal for her. With the pain and exhaustion she is feeling, it is very uncomfortable to feel like she needs to entertain.

Each day is a different day. The days were she feels like being up are good days. As those days change and her energy changes, we will stop people from coming in. Right now we are asking her if she wants to see the people that she has seen. And right now with her ANC being low, we are not wanting too many people around her.

After July 13

The days seemed to fly together… and in a week she was gone.

The hospice nurse we only meet three times. But Jesse did take a liking to her.

Jesse started sleeping more during the day. She asked to sleep with Mike at night. And she started shoving Chris and I away a bit. I think to help us with her transition.

The last day she ate was July 19… and on July 20, she threw it all up. Mike and I commented on July 19th that she looked gray at one point. And by 3:15pm on July 20th she was gone. It happened so fast.

She did allow Chris to hold her one more time on the 20th. For most of the day she appeared to be sleeping in my lap. I am not sure if she was sleeping or just so exhausted she lay with her eyes closed. She let the dogs kiss her hand around 12:30pm. Both dogs seem to know way more than I did. They gave her a kiss and let her be. Even our crazy toddler dog (she’s barely 2 and hyper on occasion) was gentle with Jesse.

It is so hard to think that yesterday August 17 was 4 Mondays and in 2 days it will be a month. I miss her more than I ever thought I would. But she was suffering so much. On July 18 she didn’t want anyone to sing her happy birthday. The last people she let sing her happy birthday were the clinic staff on July 17th. And she actually asked for it. She also asked to spend the night at Melinda’s house with Emileigh and Landan. I feel that she knew and wanted them to have one more sleepover.

I feel so guilty being places sometimes and letting Christine do things. I have been to Walmart more this month than I have in several years. Last night we decided to go have frozen yogurt. I felt really guilty not having her with me.

Last weekend we took our yearly trip to Gladstone to tube the James River. This was one of Jesse’s favorite trips. I enjoyed it, but felt guilty at the same time. I wonder if sometimes she gets mad at me for going these places without her and having what she can’t. But then I hope she knows she is always welcome to be with us. And that I wish I could see her and hug her.

I wish she was here, but her body just couldn’t keep going. I hate cancer. I wish she was still here. The house is beyond quiet. Chris is struggling too with the adjustment. She doesn’t talk to Mike and I about it because she feels the need to be stong for us. But I can tell she is lonely. I had never planned for her to be an only child. And Mike and I had talked about Chris and Jesse growing up together and having a wonderful sister bond.

We did opt not to have a funeral. It would have made Jesse uncomfortable and for us, there really will not be any closure until we are permitted to rejoin her in Heaven. Instead we will hold a celebration of her life in September here at the house. This is where she wanted to be. And we have left it open for anyone to attend because of all the help people gave us.

Thank you everyone for the cards, support, prayers, and gifts the last few days and over the years. I’d like to do something to commerate her birthday each year, but I will have to work that out in my head first.

***Disclaimer – other posts I reread several times to catch anything that is incorrectly spelled or grammatically off. This post is a little hard for me to do that.

Posted in CHKD, Jesse Updates
3 comments on “July 9 – 13 and Passing
  1. Ruth says:

    I am so very very sorry Soosan, Chris and Mike. There are no words to say. I know that Jesse will be in my heart, forever, and I have not even me her. She touched me deeply, as she did so many people.

    I wish your family much strength in the future. Sickness is a difficult road, and so is mourning.

    Please, just one personal comment, do not ever allow “guilt” to enter into your thoughts Soosan, guilt about anything! NO one ever could be a better mom then you are 🙂 … Praying for you as you go into the future, always with Jesse in your hearts and soul,

    My heart goes out to all of you, Ruth Bird,

  2. Jamie Jefferson says:

    My heart breaks so incredibly much for you all. I never met Jesse but she touched my life very deeply. I wish so much everyday that she could have beat this. I am amazed by the strength of your family. I could not imagine moving forward. I hope you can find comfort in each other, the fact you all fought so hard, and know that you will be with her again. You are always in our prayers.

    Jamie & John Jefferson

  3. Tessa Robinson says:

    I was so, so sorry to learn about your immeasurable loss today. You are wonderful parents and brave human beings to share Jesse’s story with us all. I have no doubt you will see her again someday, and until then, may your memories give you comfort and the prayers of so many people give you strength. My sincerest condolences to your family.

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