Brenna – The Jones Family

brenna jones relentless detroitI am Christine Jones a nurse at Children’s Hospital in Detroit yet from across the border in Windsor Canada. These past few weeks have been pretty horrible. It’s been quite a roller coaster!!!

On May 26th, 2014 my daughter Brenna received what we thought was a concussion from a hit in the head with a soccer ball at school. She had been looking a little pale prior, but because she was eating a little less, and was tired and had the concussion, and comes by her paleness honestly (ahh the Scottish and Irish ancestry) and as many times as I had mentioned her paleness to doctors, nobody really paid attention to that detail. So as time went on, we saw a doctor about every 3 days, for various things related to the concussion. For example her paleness, headaches, dizziness, weakness, inability to concentrate, and tiredness without being able to really sleep well. All symptoms of Post Concussion Syndrome. Seemed pretty reasonable at the time.

She never really went back to school after that- so thank goodness it was the end of the year, and we really just had graduation to contend with. Unfortunately she missed her Grade 8 graduation too, but she was not too upset. She was starting to feel so much better after being in the hospital!

In a way I am thankful for that hit in the head, perhaps we would not have been as observant to her changes in status…or as persistent with the Doctors that something was wrong, and we were starting to think that it was more than just a concussion. Because she was a competitive swimmer, her pain tolerance was a bit different than the rest of us. Let me explain. As a competitive athlete, there is muscle pain that swimmers contend with daily,(like shoulder or knee pain that goes away by morning) but even that pain was getting too much for her. She stopped swimming about a week before her head injury. Not her usual self for sure! Her goal had been to qualify for Regional’s this year, and to see her stop and not want to swim really became a warning sign that something was not quite right. Like I said, we saw several doctors in the next 3 weeks, about every 3-4 days in relation to what we thought was Neuro-related concussion injury. Every doctor I asked about her paleness. They all thought she was tired and pale due to her headaches.

I can’t play the ‘what if’ game, because this would drive us crazy- but in a way I feel like God was saying “hey,take a look at this kid, something is going on!!” when she initially had the head injury. Finally, we had a doctor listen, we had an MRI appointment booked for Friday June 20th, blood tests, and abdominal ultrasounds. I knew getting the bloodwork was going to be tricky, and she just was not cooperative! You can’t really force a 14 year old to do something like that even if it will help them. My plan was to get her to the MRI asap! Well, the MRI took about 1.5 weeks to get, after playing phone tag with the MRI office at Met Hospital. Ugh! So MRI then ultrasound, and I was hoping that I could coax her into getting the blood-work there as well.

When we arrived to the hospital for the MRI, Brenna stated she needed a wheelchair, and could not walk due to her hip pain, I just could not take seeing her like this anymore. She could barely move! So before the MRI we went to the Emergency Room, registered, and then off to MRI. It was not until about 730p that night that an ED doctor saw us, and ordered STAT ultrasound, chest x-rays, and about 20 vials of blood. Later at midnight, we were given a private room in the Emergency room and a brief diagnosis, Leukemia. Brenna was admitted in isolation to the Children’s unit at Windsor Regional Hospital, Met Campus. We were told the next week will be horrible, and plan for a transfer to London Children’s Hospital early the next day, and to go home and pack some things.

Oh WOW!! That was a horrible night. I went home to pack, and to try to sleep. I can’t believe I even remembered to ‘call-in’ to work for the next little while. I felt so bad for our Charge Nurse who took the call that night! The next morning I had to somehow explain to Brenna’s two brothers, ages 6 and 16, that their sister was not coming home, that her blood was sick, and she needed medicine to help make her blood work better in her body. I also had to explain that we (Mom Dad and Brenna) were going away, and that their grandparents were going to take care of them. The next few calls to immediate family were the hardest. I had to say the words, cancer and Leukemia, and I had no real answers as to why. Before I left the house, I looked into her room, and vowed that we would be back soon, all of us as a family. I really prayed for God’s healing for her. Actually, that prayer falls from my lips many times a day.

Brenna however was calm, and felt that finally she was going to feel better soon. My tough little cookie! I don’t know if she knew at the time, or if any of us knew the real journey that lay ahead of us. So, here we sit at London Ontario’s Children’s Hospital. Brenna was diagnosed with leukemia-Acute Lymphoblastic Leukemia- that’s where all the headaches, bloating, general achy-ness, paleness came from. We went to the hospital June20 in Windsor and we were transferred to London the next day. The next Monday, June 23rd, we had diagnostic procedures-an Lumbar puncture to check for cancer in her CSF and Brain, and a Bone Marrow Aspiration to confirm and differentiate diagnosis. She also had chemo given into her CSF as that time, just in case, and also to keep it from ever going into her brain fluids. June 24, we had a family meeting and a plan. On Thursday June 26th she got a Chest Port so that she could start chemo because she ran out of veins pretty quickly. So far, she has had 3 weeks of Chemotherapy, 2 Lumbar punctures about 10 units of blood, and probably 16units of platelets, and she looks much much better :0) She has developed an allergy to Platelets(I never knew that was possible!) so she needs Benedryl prior to those being given. The doctors and staff have been keeping her pain free, and she is able to feed herself now, and walk to the bathroom without pain. These are major accomplishments. She is on a Cancer Oncology Group protocol that is used throughout North America, and most of Europe for the cure.

She has Art Therapy almost daily, and that keeps her busy and distracted, plus a few visitors here and there. She has lost a lot of weight,(about 30 lbs in total) and developed diabetes from the high doses of prednisone. She has learned about her Diabetes quickly, and takes insulin daily, and with each meal. She gives herself her own insulin shots- a big accomplishment for someone who hated pokes so much! Brenna is tired most days, but is in pretty good spirits considering. Some days are really tough though, emotionally. And she longs to be more physically active like she is used to.

The diagnosis has been hard on our little family. Ryan and Rowan(16 and 6 respectively) are staying with both sets of grandparents, and we only get to see them for a little while. Brenna has a really hard time with too many people in the room, and too many voices, so its not ideal to have 1000 megawatts of energy bundle up in a little guy, with no where to go! Big brother Ryan is very helpful, and keeps his little brother entertained well most days.

This week was especially hard, because we thought at the end of this 36 days of Induction Therapy, we would be able to have outpatient therapy from home in Amherstburg. True to the uniqueness of my girl, she now needs a Bone Marrow Transplant for cure. A slight setback. She has a rare form of ALL. Of coarse- Brenna always did everything to the fullest! Her brothers, Ryan and Rowan have been tested, and I am 100% positive that we will find the perfect match in one of them. They got to stay with us for a few days for the testing, and it was great, although a bit cramped, to have them with us. Brenna misses them so much! (we do too!!)

We need to wait 2 more weeks to find out if they are the perfect match :0) All this ‘waiting for answers’ is so hard. I’ve been praying like crazy too for patience, for guidance, and for her recovery. Sometimes I feel a little selfish for praying so much for my baby girl, but I think that He has a lot of love to give, and a lot of healing to spread around. Being here in the hospital also brings into perspective that there are a lot of kids, and families in hard situations. This adventure will surely change my practice as a nurse!

It takes a few months to get everything in place for the transplant, so that puts the time into October. If her brothers are not a match,then it goes to the general population worldwide to find a match. The transplant takes place in Toronto, as this is the only Bone Marrow transplant unit for ALL of Eastern Ontario. After that she will be in 6 months of very strict isolation. I have no idea if that is at home or in Toronto for that period of time. Lucky for us, Brenna’s Aunt works across the street, and lives only a few blocks away! We also have many cousins, and family members who live fairly close by.

I am super thankful for the staff here at London Children’s Hospital, we have had some wonderful nurses,and a fantastic Oncology team! We have also had the privilege of staying at the Ronald McDonald house in London. It is a beautiful safe place for families, and the volunteers make some wonderful meals! Not only do we have dinner cooked for us, they have a beautiful kitchen fully stocked, and many pantry items, and easy to cook things available for lunches and snacks. I am getting spoiled by the baking of a Mennonite woman and her daughters-and I sneak some up to Brenna every once in a while :0) I am also able to do laundry without going to a outside laundry mat. That is a huge big deal.

Martin (thankfully- God works his mysterious ways indeed!) has been laid off work since April 1st-no April fools day joke that day- and has been wonderfully supportive and helpful. Work has been generous and given me the time off. They have also started a fundraiser for us, because like it or not, bills still have to be paid( I so wish there was a forgiveness clause!) I believe it is August 16th, at the K of C in Windsor. Another friend has added Brenna as their 6th Relentless Detroit kid! I am just overwhelmed at how quickly word spreads, and the generosity of others blossoms- it is very humbling. I recently said to a friend, that this journey often reminds me of the poem ‘Footprints.’ I see our family and friends walking beside us, I sometimes do not know where God is, but I know he has to be there! I see Him working through friends to help us, providing comfort, love, encouragement, support in many ways. Sometimes He carries us through our friends, and shows his love and gives us strength through them.

I never know how to truly say how thankful I am, how thankful Brenna is, and our family. Thank you is a small thing. Without all these people in our lives, I think that I would have caved and sunk a long time ago. What those around us do, whatever small part you may think that you play, it is through your thoughts, prayers, and notes of encouragement that get us through each day. Keep them coming…its a long road and we need good company!
Time to move on, and kick some Leukemia butt!

Please keep her in your prayers-

Christine

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