What can we do?

It looks like Abby will have the port put in on Friday and starting chemo on Monday, April 4th. It is times like these in our lives where we all feel helpless yet we want to do something. So many people have asked "what can we do" to help them and Abby through this process? I have a few suggestions. Abby has enjoyed the cards from her friends, videos of friends, thoughtful gifts and things to do while in the hospital. Cori and Craig will have their computer while at the hospital, so emails and pictures are welcomed and appreciated.  To make things a little easier while they are at home, meals are always appreciated. I realize that not everyone lives nearby and can make food, but gift cards for them to pick up dinner would be very helpful. Temecula has most restaurant chains, but some of the family favorites include CPK, Rubios, BJ's pizza, Starbucks:), In and Out, Cheesecake Factory and PF Changs. 

During chemo treatments, Abby will need to limit her exposure to germs and will be home schooled by her teacher from her school. It is truly unbelievable what is happening to Abby. On behalf of the Radke's and our entire family, we thank you for the love, support, prayers, phone calls, emails and concern for our girl! 

Family Meeting Today

Today we met with the Neuro Oncologist to discuss the treatment plan. Next week she will have a port put in near her collar bone. This will allow the doctors to administer the chemotherapy medication and it is also used to get blood for misc. lab work without poking her every time. The port will remain in place for the duration of chemo treatments. If all goes according to plan, she will begin chemotherapy treatment next week. Chemo will be administered inpatient over 3 days. She will have approx 21 days off and repeat this cycle 4 times total. After chemo is completed she will begin radiation for approx 15 days (Monday through Friday for 3 weeks). At varying points of treatment she will have MRI's to make sure she is responding to treatment.  I will, of course, keep you updated along the way.

3-27-10

Abby was discharged from the hospital this afternoon!!! 

Biopsy Results/ Diagnosis

Biopsy results showed that Abby has a pure germinoma, which is a cancerous brain tumor. With chemo and radiation the cure rate is very high (95-100%) and the return rate is low. Central Nervous System Germinomas are very rare. Statistics show that about 38 kids a year in the United States are diagnosed with this type of tumor.  They occur primarily in teenage males. I guess you could say that Abby is "super rare". The family will have a meeting with the Neuro Oncologist next week to discuss the treatment plan.

3-26-10

Yesterday, Thursday March 25th, started out rough. Cori and Craig said Abby looked really bad. Her eyes looked grey and sunken into her head and generally looked exhausted. This was due to dehydration. Her urine output was more than her liquid consumption. She is not able to take her medication to control that right now because it causes her sodium levels to decrease.  The Neuro Oncologist met with Cori and Craig yesterday afternoon. He informed them that she does have a germinoma, but the pathology is still not back to determine whether it is a pure germinoma or mixed malignant. He also reported that her thyroid levels are low, which have been for a few months. Abby will now be on thyroid medication along with her vasopressin (hormones that her pituitary gland is not producing) for the rest of her life. It is possible that other hormones can be effected with chemo and radiation treatments, which we will not know until that process is completed. 

Today, Friday March 26th, Abby seems to be improving. She and Cori got a good nights sleep, Abby looks better, she got up and is moving around her room and ate a good breakfast. Her sodium levels are still low and she can not be discharged from the hospital until her levels are stable. She will definitely be there through tomorrow and possibly Sunday.

3-24-10

No biopsy results yet. Abby is still in the hospital and had a rough day today. She had an emergency CAT scan last night because her heart rate was low. Doctors were looking for air pockets or blood on the brain. The CAT scan came back normal. She continues to have headaches when sitting up and walking. She is also experiencing an electrolyte imbalance / low sodium which is a complication of the diabetes insipidus and can cause heartbeat irregularity and fatigue.  At approx. 9:30 pm this evening she was transfered to the Intensive Care Unit because her sodium levels are dropping quickly and she needs to be monitored closely. Doctors have put in a central line near the groin this evening. This will allow the nurses to get blood from her every 2 hours tonight and monitor sodium levels. An emotionally draining day for Abby, Cori and Craig. Abby desperately wants to go home. She has gone through so much in the past few days. 

Biopsy 3-22-10

Abby had the biopsy today. The surgery was approx. 2 1/2 hours long. To get to the effected area the surgeon entered through her skull above her right eye at the hair line. The incision is small and did not require stitches. It's "glued" together. We will not know the results of the biopsy for a few days. The surgeon did mention that the tumor was also in fluid filled spaces in the brain that were not detected in the MRI's. It is unclear if it has spread along the ventricular system in the brain or whether it has been there all along. Abby has slept most of the day and is on morphine for pain. She woke a few times briefly and complains of a headache and the need to urinate, but does not understand the concept of the catheter. Once she drinks enough water they can remove the catheter and saline IV. She has not felt like eating, but had a bite of licorice and talked on the phone to Mason and Carly to say good night.

Thursday's ( 3-18-10) Test Results

Yesterday, Abby had 2 MRI's and a bone scan. She did well through all the procedures. Results were negative for LCH (Langerhans Cell Histiocytosis). We suspected that this would be the result. Now, she will have the biopsy on Monday to determine what type of tumor she has- a pure germinoma or a mixed malignant germ cell tumor. Biopsy results may take a few days. Once we know the result, a treatment plan will be put into place. Abby will be at Children's Hospital in San Diego for a few days after the biopsy. Cori told me that she is making her packing list for the hospital which includes pj's, licorice, little oreos, little chocolate milk, almonds, cashews, goldfish, raisins and a chocolate bar:) 

Biopsy

The biopsy is scheduled for Monday, March 22nd. The biopsy may take a few hours. Abby will be in the hospital for a few days after for monitoring. 

More Tests

On Thursday, March 18th, Abby will have a sedated MRI of her spine and a 4D MRI of her brain. Later that day she will have the bone survey, which I believe is a typical X-ray. The MRI of the spine and bone survey are to rule out Langerhans Cell Histiocytosis (LCH). The 4D MRI of her brain is for the surgeons to "map her brain" for the proper approach in preparation for the biopsy. 

The Beginning

As many of you know, Abby has undergone many tests to figure out what her diagnosis is. I wanted to give you a little history in how it all began. Cori had mentioned to me last Fall her concern about Abby awakening several times in her sleep to drink water and urinate, sometimes up to 5 times a night. In December Abby went to her Pediatrician. Her doctor said she was a "classic case of diabetes insipidus". This type of diabetes is considered "water diabetes"  and not the common sugar diabetes. So, why does she have this? A common cause is a tumor on your pituitary gland in your brain. After Abby's pediatrician visit in December, she was sent to Children's Hospital in San Diego that day for an MRI of her brain. At that time, a tumor was not seen but it was noticed an absent pituitary "bright spot". In short, she was experiencing declining pituitary function. Abby then met with an Endocrinologist who performed many blood tests and she is now on hormones to replace the ones her body is not producing naturally. She will be on these hormones for her lifetime. Tests continued. Abby then had a spinal puncture (spinal tap) in January which showed no cancer cells in her cerebral spinal fluid. Positive news, although doctors informed Cori and Craig that she has elevated levels of proteins ( I don't know which ones) in her blood and cerebral spinal fluid. The doctors were confident that a tumor was forming. On February 24 a sedated MRI was performed and at that time it showed an enhancing mass on the pituitary stalk. Most likely the diagnosis is a germinoma which is a form of cancer and not operable. With this information we went to Children's Hospital in Los Angeles for a consultation/second opinion from a Neuro Oncologist there. Doctors in SD and LA are in agreement. The doctor in LA recommended a bone survey and MRI of the spine to rule out Langerhans Cell Histiocytosis (LCH), which are bone lesions an also considered a form of cancer. There is a 10-15% chance of this diagnosis. Abby will have the MRI and bone survey sometime this week. If these tests come back negative, Abby will require a brain biopsy. She will most likely require chemo and radiation.

I know all of this information is detailed an overwhelming. As a family, we are trying to understand it all and support Cori, Craig, Abby, Mason and Carly. I wanted to create this blog to keep everyone informed of Abby's journey and upcoming treatments. Also, to offer support and love for Abby and her family. I will update the blog as I receive more information. 

In the meantime, please keep Abby and her family in your thoughts and prayers. The doctor in LA assured us that this is highly treatable and curable with minimal to hopefully no long term effects. I know she WILL be okay. It is going to be a long rough road, but together we will help her get there!