Such a perfect fall day for the "M" family! Thank you for making your way out to see me again this year!

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Celebrating one year together. Wishing you many more years of happiness! Click on the photo for a look back at their wedding
 

Celebrating one year together. Wishing you many more years of happiness! Click on the photo for a look back at their wedding

I want to thank everyone who participated in the CBM Childhood Cancer awareness project. I have heard so many positive comments about the photos, project and the experience from the kids and families that participated! We also included family and sibling photos in the photos! I didn't want to leave them out of the mix. Often they are the most affected by the diagnosis. 

In April 2019, we discovered Camilla was having seizures, typically 2-3 per day. We brought her to her Pediatrician and we were sent to the Minneapolis Childrens Hospital ER. They referred us to Noran Neurologolical Clinic, who performed an EEG test, prescribed medication, and ordered an MRI. We followed up with the MRI at The Mayo Clinic on Wednesday, May 8 and they immediately called us back to share that they found a tumor on the right side of her brain. They conducted a 48 hour EEG test that Thursday - Saturday to monitor the seizure activity and recorded 8 seizures, mostly during her sleep.

On Thursday, June 6, Camilla undertook brain surgery to have her tumor removed. It was a risky surgery, given that the tumor was in the part of her brain that controls her motor skills, however the Neurosurgeon was able to remove it successfully without any side effects. Camilla was walking and riding trike the next day! It was a complete miracle. We thought we were done with this medical journey.

Unfortunately, we learned some devastating news at the end of June. The Pathology Report confirmed that it was an Anaplastic Glioma – a grade 3 brain tumor. There is presently no cure for brain cancer, so all we can do is try to stop the cancer cells in their tracks and “reset the clock” with treatment. The prognosis is 3 years.

Camilla endured 33 Proton Beam Radiation treatments over the course of 7 weeks in Rochester, from July 10 to August 23, and received anesthesia each time. She rang the bell on Friday, August 23 and continues to remain just as active as ever.

Her next MRI scan will be October 4. Then we will continue to scan every 3 months. If the cancer cells form another mass, we may have to do chemotherapy, radiation, and/or surgery again. She is continuing to take medication twice a day to control her seizures.

The saying "though she is little, she is fierce" describes Camilla well. She is usually running around with a ball, riding her bike, or playing at a park. She is full of love, energy, and spunk. She likes to play with her sisters and enjoys the Disney princesses, Minnie Mouse, and the Minions. 

We don’t know what the future holds, but she will deal with brain cancer her entire life unless a cure comes out. We may never understand why things like this happen, but we know God is sovereign and has a plan. He is the source of peace, love, hope, comfort, and healing. We have experienced the power of prayer and the fact that she remains her normal self after brain surgery and radiation is truly a miracle.

Joshua 1:7 Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

Philippians 4:13 I can do all things through Christ who gives me strength.

Follow Camilla's story on CaringBridge via this link...Camilla's Story

Here are some incredible organizations supporting families facing pediatric cancer:

• The Ronald McDonald House
• HopeKids
• Make-A-Wish 
• Pinky Swear Foundation

Before Alex's diagnosis, he had been throwing up numerous times a day for over two months and we had been chasing a GI diagnosis with sedated endoscopy and other tests due to his misleading symptoms.  We had been to the Children's ER on numerous occasions and I had multiple doctors who told me "your son does not have a brain tumor" because he passed the physical testing they did with flying colors.  They were expecting symptoms like being off balance, one-sided weakness, headaches, etc.  Finally, after about the 5th trip to the ER, we were referred to a neurologist who ordered an MRI of Alex's brain.  On June 7, 2018, right after the MRI was performed, we were told to stay in the room waiting for what seemed like an eternity and then we were told someone was going to call the room and we should pick up.  On that phone call, we heard the words no one wants to hear "your son has a brain tumor".  That day our world was turned upside down.

The next few weeks were a whirlwind in which we met with the neurosurgeon and neuro-oncologist at Children's to review the brain MRI where we learned that his tumor is large, not fully able to be removed via surgery, and diffuse (mixed with healthy tissue).  During that time, Alex also had a needle brain biopsy performed to attempt to determine pathology of the tumor.  We were told the pathology information was important in providing information that would lead to a better treatment plan recommendation.  They sent the biopsied tissue to both Children's Minnesota and St. Jude's, but Alex's brain tumor pathology was reported as inconclusive by both places.  The report said they favored the diagnosis of a glioma (very generic type of brain tumor) but none of the pathologists who had reviewed the sample could say with 100% certainty the pathology of the tissue.  The genetic mutation tests on the tissue sample that they performed all came back negative as well.  With this knowledge, Alex's team of doctors were not comfortable with starting any aggressive treatment plan including surgery, chemotherapy, and/or radiation without knowing the pathology conclusively because the pathology usually defines what treatments may work best, so we were told that the recommendation was to repeat MRI's every few months, or sooner if any new symptoms presented themselves or his seizures increased because those things could mean tumor growth. 

Because his tumor makes him symptomatic with the seizures, the biggest part of his treatment right now is just trying to get his seizures under control with the help of his neurologist.  Even on two seizure medications, he is still not fully controlled, but we have no more actual vomiting on a daily basis and the seizures are much less on the medications.  This has been his biggest challenge so far with his diagnosis, but Alex is a trooper and tries his hardest to be a typical kid.

So for now, we take it day-by-day and live every day to its fullest until the next MRI scan and be happy that for now our son is surviving his diagnosis and thriving because we do not know what the future holds and when or if his treatment plan will change with each new MRI scan he has.

Places to donate for the cause that mean a lot to us are:  A Kid's Brain Tumor Cure ,  Children's MN , Ronald McDonald House

You can follow Alex's story on Caringbridge 

*Click on the photo of Alex to see more from his session.

A week after Anna's first birthday she was diagnosed with T-cell ALL leukemia (also known as acute lymphoblastic leukemia).  The Children's Hospital website describes ALL as "a cancer that involves the white blood cells of the bone marrow. The condition develops in the bone marrow where blood cells are produced".  The doctors were able to make this diagnosis through a variety of tests and procedures.  This is treated through chemotherapy, which Anna has just begun.  

Anna celebrated her fourth birthday in April! Since she was diagnosed right after turning one, it's been interesting to think back and realize that this was really her first birthday where she was feeling well and not on treatment. We are so grateful for that and have enjoyed watching her excitement and love for life each day!

We still hold our breathe each month as we wait the 30 minutes or so for labs to come back and it is a reminder to enjoy the gift that has been given to us each day! As we think back on the last years, we are reminded of all the love, prayers and support that have been shown to us. Thank you for being there and continuing to be there for our family through this entire journey.
 

We love and support the following organizations...

Childrens Minnesota Cancer Kids Fund
CureSearch for Children’s Cancer
HopeKids
 

Follow Anna's story on CaringBridge via this link...Anna's Story

*Click on the photo to see more from Anna's session.

Rissy loves to share her story of brain cancer and awareness, she loves to find ways to give back and let others know we need new treatment.

Rissy was diagnosed February 8th, 2017, after 10 days of being sick. We thought she just had an ear infection. After 10 days of being in and out of the doctor's office we were sent to the Children’s ER and a CT scan was done. We then found out she had a mass on her brain and our world was changed as we know it. The next day she went in for an EVD tune to drain the fluid that is suppose to go down her spine, but wasn’t due to the mass blocking . She was transferred to the other Children’s St. Paul the next week and then the next day she had surgery to remove the tumor and recover. She spent the next week relearning to walk and talk. A week later she came home and got to see her school and friends. In March she started 30 rounds of radiation at Mayo Clinic, then got to come home and finish out the school year. Summer Break in June started off with round 1 of chemo . She was in and out of the hospital with fevers. Each month was 1 round ( and back in for infection) she did manage to go to gymnastics and be a kid now and then. She did get to start school, but 1 week in she had her last chemo and did not go back to school until after her birthday. Now she has scans and is back to gymnastics and school.

She is a brain cancer (medulloblastoma ) survivor. 

We support Blair's Tree of Hope, Jessie Rees Foundation, Pinky Swear Foundation, Ronald McDonald House of Rochester, and Children's Hospital.

*Click on the photo to see more from Larissa's session.