Background:
We rushed one of our twin daughters to the hospital the evening of January 13, 2019 with concerning symptoms, after having already been to see 3 different doctors within a period of approximately one month. We found a pediatrician who understood our concern and recommended a CT scan that same night. Our precious child then had a life saving operation to relieve the pressure in her brain. She had hydrocephalus as a result of a tumor in her cerebellum. I remember hearing the word “tumor” and experiencing a fogginess and surreal type of sensation where I was standing outside of myself… looking at myself being handed some bags. The woman said something like: “ You will be in the hospital for a while and we have these things to help you as you will not be going home tonight.” I knew she was talking to me, but I didn’t know what to say. The doctors had just told us Aven would need to have brain surgery to have the tumor removed. B-R-A-I-N…S-U-R-G-E-R-Y. That took a while to sink in. When it did, I looked at Aaron whose face had gone pale. I could see pain there and I heard him mention his dad. The team at the Stollery Children’s Hospital moved some things around and got her into the OR within a day.
Diagnosis:
The amazing surgical team were able to remove all of the tumor and sent a sample for a biopsy to be done. Her cancer is the most common type of childhood cancer, medulloblastoma. She is in the 3rd subgroup, stage 4. A panel of doctors approved and recommended proton radiation therapy in Jacksonville’s UF Health center.
Before the Trip:
I feel like a million things happened before we arrived in Jacksonville although we only found out on a Friday that we had to fly out the following Monday. Everything happened so quickly and there was not much time for preparation. Our ward family (church group) and local community rallied around us and lifted us by performing countless acts of kindness. My husband Aaron will be writing some of our experiences during the different stages of Aven’s journey.
Sweet Stitches:
How does one arrive in a place one has never been to and where one knows no one, yet manage to have a sewing machine in the first week and a lovingly made spicy soup in the next? Well, if you are member of the church I belong to, there is a network of sisters willing to help you, virtually anywhere in the world.
We discovered when we got here that we were in the area of the Jacksonville Florida East Stake Center building for our church meetings in The Church of Jesus Christ of Latter-Day Saints. This building is shared by the Hendricks Ward and the San Jose Ward. We attended the Hendricks Ward first and sat behind a young family where the mom happened to be the Primary (children’s group) president of the ward. We got to chat for a little bit after church and I mentioned that I was looking to see if anyone could lend me a sewing machine or a serger. I didn’t know if there would be any I could borrow. Aven had asked for some bandanas after we had the conversation about hair loss. The radiology doctors here stated it would happen.
I found myself in the situation of wanting to make things easier for her in any small way that I could. Getting strapped to a table, face down with a mask on her head and body, without a parent present and when the protons are released, being completely alone and without any earthly help, is the hardest thing my child has had to do in her short life. At such a young age, she demonstrates a power and courage I have come to admire and aspire to. Each day is a battle and I watch them take her away from me and walk her to the doors leading to the rooms they call gantries. Her little body walks beside a stranger and on the back of her head, I see one of her battle scars as each step she takes creates a physical distance between us. I am comforted by this truth. I can say without a doubt in my heart, that heavenly help has been present with her in the room.
Sharing my desire to sew some edges on some fabric for bandanas, the kind primary president offered me her own sewing machine. She dropped it off at the Ronald McDonald House where we are staying during the treatment. I spent Aaron’s second last day here with us, sewing. He and Aven had a day to themselves at the Museum of Science and History before her last treatment for the week. It felt good to be able to do something tangible…visible to help her. More than ever, I felt so much love for her as the machine finished the edges on some pretty fabrics she chose. Like the song goes, there was love in every stitch. Sweet stitches now border the squares covering the raw edges of the fabric I cut for Aven. Keeping my hands busy helped calm my worries and anxieties about this whole process. I had a chance to take breaks and listen to upbeat music of my choice. This is not always possible in a house full of music lovers.
This sister who didn’t know me before I stepped into the building last Sunday, blessed my child by allowing me to use her machine. Most of all, she blessed me. I am the person that Aven looks to when she feels weak. Just as I turn to my mother in times of crisis for her assistance and her iron will, so does my child now turn to me. How important it has been to show her faith, to continue in prayer, to share my testimony with her about the love that Heavenly Father has for her specifically. How important it has been to keep my energy high and my outlook positive in her presence. How blessed we have been to have Aaron here, to feel the power of the priesthood as he blesses her, first with a blessing for the sick and the afflicted and then for blessings of comfort, whenever she has needed them. His heart is so good, she senses that. She leans on him even when she feels strong, like a decorated captain leans on a faithful lieutenant helping her steer her ship. She trusts him completely and is energized by his strength. I have failed to be strong so many times when not in her presence. Yet, every time I start to feel weary, down-hearted and hopeless, my merciful Heavenly Father sends me small reminders of his love. He reminds me whose team I am on. I remember how many petitions are lifted up to him on a daily basis for the health of this little one he entrusted us with. How many pray for me and for Aaron and for our young family. I feel my heart growing, my spiritual muscles being used for the purpose they were intended.
Spicy Soup:
There was another sister who didn’t know me before I walked into that building last Sunday. She is a faith filled Colombian dynamo. This is the kind of woman you do not want to face in a street fight. She is a no nonsense, tell it like it is, won’t take any sass kind of lady. She is amazing and has this zeal and passion for living her faith which is contagious. She didn’t let me leave the Spanish relief society meeting without getting my number, even though I told her my new friend in the Hendricks Ward had given me hers. She messaged me that same night asking what I might need. I mentioned that ever since we arrived and Aven noticed the snow we left was no where to be seen down here, she kept asking to ride a bike. I noted that later on in her treatment, we were told she might not have very much energy so we wondered if there was anyone in the ward that had a child in her age group that might lend us a bike for an evening. It turned out the Spanish Relief Society had an activity the following Thursday night.
Apart from helping to plan the activity, finding childcare for some sisters who didn’t have any and spending part of her evening helping the missionaries, this leader found another kind sister to lend us her little girl’s bike which had training wheels. This was awesome because Aven is still struggling with some balancing issues and having training wheels allowed her to have more confidence and desire to work on riding a bike. This is the same little girl who less than a month ago was practicing walking and was re-learning to swallow!
That Sunday I also met another Salvodorean sister who took me under her wing. She added me on FB so that I would be able to join the RS sisters page for this ward. She followed up with me during the week to ask how Aven was doing and to offer assistance. I really felt when I met her, God had placed her in my path. That has always been the way for me. So often throughout my life I meet people sometimes spending only brief moments with them, but they become friends instantly.
Back to this loving, women’s leader, I want to say that her ability to organize and run things from behind the scenes is astonishing. Her presidency (team) is talented and can bring women from different areas of Latin America together. At the mini “Time out for Women” that they planned for the Thursday night, there was a brief spiritual lesson, a meditation exercise and then some fun games. The room was boisterous and full of vibrant personalities. I laughed so much and it felt so good to laugh. At one point, I did an internal check and realized: “Wow, Jacqueline, you are actually laughing out loud.” And it was healing. There, among a group of women who didn’t know me from a hole in the ground I felt safe, welcomed, and loved.
The Relief Society president showed up Saturday morning at the Ronald McDonald House with a bag with some delicious bowls of spicy soup as well as a taste of arepas and another pastry that was warm from having just been made. She brought treats for Aven and platano. I had been looking for ripe platano and clearly she felt inspired to bring some. The soup had vegetables, chicken and ginger. It was a thick broth and for a little six year old whose appetite has tanked in the last week, it provided a much needed meal of rich flavour and home-cooked goodness. Aven had a full serving! Aaron and I also enjoyed some, and it now must be added to the list of family favorites. Sister Maru (as she is called by everyone) helped us clean up from making breakfast and sat down to insist I tell her what I needed. By the time she left, we had a ride for church on Sunday and an offer to get rides back from the proton center on days when our appointments are later than the shuttle runs. I also had some ideas to help Aven in her journey and while we are far from home. She offered to help me carry my burdens and I humbly accepted her help.
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| We found some fabric to make her bandanas and I got a few done. |
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| This soup was hearty and delicious! |
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| Aven and Aaron hung out riding the bike and watching church basketball while I was at the activity night for the San Jose Ward Relief Society sisters. |
Past updates can be found on: https://www.gofundme.com/help-aven-beat-cancer
https://www.facebook.com/groups/sunshinegirlaven/
