Abigail - Neuroblastoma

[Annabeth]

Here's an excerpt from what we originally shared with friends:

Abigail had not been feeling well for a couple of weeks (fever, RSV-sounding cough, lethargy). On Saturday, January 15, Annabeth noticed a lump on Abigail's lower neck near her shoulder. They took her to the urgent care and were told to take her to a children's hospital for blood work to determine what it might be. After drawing blood (which Abigail HATED), x-rays of chest and abdomen, another IV, and a CT scan, the doctors believed it to be a pediatric cancer called Neuroblastoma. The tumor starts on her left kidney/adrenal gland and works its way up through her torso, behind her heart, and surrounds her aorta artery.

A surgery was set for Monday, January 17 for the doctors to get a biopsy of the tumor as well as a biopsy of Abigail's bone marrow.

Saturday night they put Abigail in PICU (pediatric ICU) and decided to drain the fluid around her lung that night instead of waiting for Monday. The surgeon inserted a tube (big, long thing) in between her ribs and lung muscle. The lung was collapsed, and the area was full of fluid. They drained an insane amount of fluid.

Sunday she remained in that state with an IV, blood pressure cuff, oxygen monitor on her toe, tube going into her chest, and pediatric cables taped to 3 places in her back. She received morphine every 2 hours because adult patients report that chest tubes are extremely painful to have in.

Sunday night was not a good night for Abigail. Her breathing became extremely labored, and she did not look good.

On Monday the doctors were able to move her surgery time up 1.5 hours to try to help her. The surgery went well, and the Goss family was so very grateful!

She was in PICU for 3 weeks, most of that time fully sedated and intubated to allow her lungs time to heal. The tumor had complicated her organs and was preventing lymph from draining normally; she had extreme edema. She received one round of chemotherapy while sedated.

We finally got discharged, only to return the next day because she was vomiting uncontrollably--diagnosed with rotavirus ---the common childhood 'stomach bug'!!!

Finally got over all that; we started her on Protocel. Decided she needed one more round of chemo to keep the tumor in control and to give Protocel time to work. I hate chemotherapy, but we felt inspired and at peace with the decision. She made it through remarkably well.

Her oncologist says she has had a 92% decrease in tumor size!!! And that was only from round 1 of chemo. So we feel she has a really good path to start Protocel on.

Neuroblastoma is a childhood cancer that is very rare, and usually the child is born with it and it takes some time to detect.


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Editing Reason: Changed name of subject line just slightly.

[ann td]

AnnaBeth,

Our son was diagnosed with Neuroblastoma at 6 mos of age and went thru 9 mos of chemo and 2 surgeries. His was in the spinal canal and right chest cavity. We found out later that there is more than one kind of this childhood cancer. He is now 24 yrs. old and cancer-free.

We knew nothing of Protocel at the time...I didn't find out about it until 5 years ago. I'm so glad you're giving Protocel to your precious daughter and hope you will get all of the advice you can from those who are more of the experts with Protocel since she is so young.

May God bless you all!

[Annabeth]

Hi Ann,

Thanks for your kindness! Yes, there are different kinds of neuroblastoma, but since it is one of the more rare childhood cancers, there isn't a lot of funding for it, nor a lot of kids to get good clinical data with research. I'm sure that 24 years ago there was even less information known about it.

I am so glad to hear that your son is cancer-free. What a blessing!

We are hoping Protocel works for our daughter....hoping and praying.
Thank you for saying hello! It is always good to talk to other parents who have experienced this.

Annabeth

[Rebeccawomack]

Annabeth,

I am so glad that you have found the forum! I'm so thankful to read of your sweet Abigail and her persistence! What a patient and sweet heart she has, enduring so much at such a tender age. I am also eager to pray for the strength of you and all who love her. I cannot imagine how difficult it must be to go through all of this as a mother. God has given you such a blessing in the reduction of her tumor! How encouraging. I am so glad that she is on Protocel. I warmly welcome you and your family to the forum. You have already had a remarkable journey, and I pray for God's continued blessings along the way.

If there is anything I can do to be of assistance, please let me know. I typically write in support of the emotional and spiritual side associated with healing.

May God grant you continued strength in the days and weeks to come and may His healing touch rest upon Abigail.

In Him,
Rebecca

[ann td]

Annabeth,

Sounds like you've done a lot of homework to understand all you can about Abigail's cancer. I found that knowledge was powerful but could be scary. I've added her name to my prayer book and will take joy in lifting her and you and other family members up. A scripture that came to mind soon after our son was diagnosed was John 9 where Jesus' disciples asked, "Who sinned, this man or his parents that he was born blind?" Jesus replied, "Neither this man nor his parents sinned, but this is so God's work may be manifested in his life." That became my prayer. It will be my prayer for Abigail.

Ann

[Elonna]

Annabeth,

Welcome to The Corner. I'm so sorry though to read of the reason for you joining our community. However, it sounds as if your Abigail is a "fighter" even at her young age. It is so heartbreaking for our children to be diagnosed with cancer. I never cease to be amazed at the fact that they will endure anything we ask of them in the quest for healing because we ask it of them and they do so without much complaint. We as adults could take a lesson from how they bear up in their cancer journeys.

I wanted you to know that I moved Abigail's thread to the children section of The Corner to keep some continuity going in our thread and forum sections. Whenever you want to give us an update on Abigail's journey, please come back to this thread to post. By doing so, her journey will be easier to follow.

Remember I'm here if you have any questions. With anything you would consider that you need an urgent answer to, it would be best to give me a call as I am not able to be on The Corner every day.

[Elonna]

AnnaBeth,

I noticed that it has been some time since you gave us an update on how Abigail is doing.

When you get the opportunity, please drop a few lines. Thanks!

[Annabeth]

AnnaBeth,

I noticed that it has been some time since you gave us an update on how Abigail is doing.

When you get the opportunity, please drop a few lines. Thanks!

Hi everyone,

It has been a while. I am thrilled to tell you that Abigail is doing well and currently No Evidence of Disease (NED) in neuroblastoma vernacular.

We gave her Protocel religiously for 5 months, right through chemo: rounds 2 through 5. We stopped at that time because we had to go through a stem-cell COLLECTION (not transplant, never have, hopefully never will) and the apherisis doctor wasn't comfortable with Protocel during that time.

When we stopped Protocel, we began a rigorous anti-cancer, nutritional supplement program to regenerate the nutrition her body so desperately needed.

All in all, I loved Protocel. We will never be able to "say" what helped her respond so well, but as one person said to me "who cares? As long as she had that response!" After 2 rounds of chemo her huge tumor had shrunk over 90% and all her many metastasis had cleared and her bone marrow too. (which is pretty fab for high-risk neuroblastoma).

Anyway, we also did a 5 week course of Protocel a couple months ago as a maintainance thing.

Abigail is calling me. Gotta go. Will try to stop back in here more frequently!

Hope on, Trust on.

[ann td]

Annabeth,

What a joy to read how well Abigail is doing! Over the years since our son was diagnosed (1987), we've found out there is more than one kind of neuroblastoma. Maybe you already know this. Regardless, it is such a blessing to you all that she is doing so well. I'm glad you did the 5 month maintenance recently. It wouldn't hurt to do that every so often.

May God's light continue to shine upon her and your family!

[Elonna]

AnnaBeth,

Thanks for stopping by with an update on Abigail. Thrilled to read that she is doing so good!!

I just wanted to say something about maintenance with Protocel as I noticed that you mentioned a 5 week session for maintenance. While, I'm thinking you only did 5 weeks because of other therapy protocols being done, in reality this is not a sufficient amount of time on Protocel to be considered a true maintenance. So, I would encourage you to slip in more times of maintenance with Protocel.

A true maintenance is at least 3 months non-stop with Protocel #50 or 4 months non-stop with Protocel #23. These times of maintenance with Protocel should be done around the same time of year every year and should be done exactly as one did when dealing with their cancer. I would encourage you to continue to do maintenance for Abigail throughout her lifetime to help ensure that she does not have to deal with cancer again. I am concerned about the chemotherapy that she is doing and that she will have repercussions in later years from it. Doing maintenance with Protocel will hopefully minimize these.

Please drop by from time-to-time to keep us updated on how Abigail is doing. Much continued good health for Abigail as well as a long full life!!