I 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!
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.
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.
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.
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.
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.
Time to move on, and kick some Leukemia butt!
Please keep her in your prayers-