Molly Campbell & The Campbell Family 2013-08-04T03:20:48Z http://mollycampbell.ca/feed/atom/ WordPress DavidC <![CDATA[Update. Aug 3, 2013]]> http://mollycampbell.ca/?p=845 2013-08-04T03:20:48Z 2013-08-04T03:20:48Z Continue Reading]]> We are still here and Molly’s “kids” are doing relatively well. Bedtimes are still particularly tough for them as that is when they are left to their thoughts and the sadness starts to creep in. We try to fight back our own tears and try our very best to get her “kids” to focus on the good times and that she is in a better place now. The days are tougher for us as trying to stay busy with simple busy work still doesn’t distract us from the giant hole in our life. Everywhere I look I am reminded of my sweet little girl and my heart still aches all the time. We are still waiting for final reports from St. Jude and we are hopeful that those will fill in some blanks for us. It make it all harder still not knowing exactly what happened. We appreciate all the messages that are still coming. It helps us to know that our Molly made such a positive impact on this world and we hope that impact can be felt for many more years.

Right now we are looking for a way to honour our Molly and the truly incredible legacy she left us all. One way is to get behind an event called Light the Parliament/ Legislature Gold in September.

For our sweet Molly, it was not Leukemia that ended her life, but the treatment used to cure it. What we are now learning is that the treatment used for Infant ALL is not targeted to the gene mutation that many of these babies have. I feel like they are just taking a shot in the dark. Drugs used to treat various other types of Leukemia are used in higher and more frequent doses for infant Leukemia. The treatment is so intense that many babies are seldom out of the hospital and they suffer severely. Many of these drugs were developed over 25 years ago and come with a list of possible side affects so long it makes my head spin. Brain damage, infertility, secondary cancers, lung disease, heart disease, growth deficits, hearing loss, respiratory distress… and the list goes on and on and on. During our fist transplant, we received these print out that were 10-15 pages long and we often wondered, is this the right path for our baby? Why are we putting our baby through this? And then I learned very quickly that we had no other choice. Without these second hand, antiquated, adult drugs, our baby would die. As it was she was only given a less than 10% chance of survival so we had to fight with everything available to us. It always made me so angry when people heard Molly had Leukemia and they would say “well at least she has the good cancer”. Most people hear Infant ALL, ignore the Infant and assume the 80-95% cure rates that are published by each and every children’s hospital out there. Yes inroads have been made in children’s Leukemia but sadly not at all for the hundreds of infants still battling this horrible disease.

With the treatment options available now, some babies are cured (the lucky ones). Many are not. Some babies develop devastating and life altering long term side effects from this treatment meant to cure them. And for those with infant Leukemia that relapse, the treatment options get fewer and fewer until all that is left are straws to grasp and talks of time if even that. Sometimes the end comes swiftly and painfully and you are left asking why or if we could have been better prepared. We spent the last 7 months of Molly’s life grasping at straws and frankly, it makes me sad but mostly it makes me angry. I am angry at the lack of attention paid to the children who are still fighting cancer. Angered by the band aid approach to treating paediatric cancer. Tired of the lack of change. How many years will pass before we say enough is enough? How many children need to suffer and die the way our beautiful Molly did? Right now I am scared that I may not have it in me to watch other children suffer. I am scared to read about other families who are left to pick up the pieces and live their lives without precious children like we are trying to do. Or families and children that will have to live with the devastating long term side effects of treatment.

I wonder what it would take to open the eyes of those who have the power and influence to make change. To open the eyes of drug company executives and those in government to the reality of childhood cancer. How would they feel when offered a protocol for treatment of their child that had more chances to harm than to cure. A protocol like Molly’s with a less than 10% chance of success and enough toxins and chemotherapy to kill an adult. A protocol using drugs that are 25+ years old and used to treat other cancers? Or once they had exhausted all conventional treatment, how would they feel about having to pound the pavement, to raise money for research in the hopes that they could beat the clock. How would you feel? I feel overwhelmed and most days I feel like hitting a punching bag. What is being done now is simply not good enough. My baby’s memory deserves better. The other beautiful babies and children that we have met on this journey that are still fighting, deserve so much better. I hope that my beautiful daughter Molly’s story can motivate someone to start the wheels of change moving in the right direction.

Now you may ask, how can you help? If you feel strongly like I do, that we need a cure, and that the facts surrounding paediatric cancer, the leading cause of death by disease for children in Canada, are shameful, you can share the stories of children like our Molly. You can raise awareness. If one thousand more people become aware by reading this post, then we have done well but if ten thousand people become aware then we will have done even better. You can donate to an organization that raises money specifically for childhood cancer research. But ask how much actually goes to childhood cancer research. Unfortunately most range between 1-3% total! By donating to BCCHF in Molly’s name, the foundation allows us to specify where the funds go and we will make sure they to go to childhood cancer research. In October, the world is showered in pink (in fact the world is more and more often showered in pink). I also support breast cancer research and the need for breast cancer awareness, but I wish that the world could also be showered in gold. Gold, in case you are not aware, is the official colour of childhood cancer. September, is childhood cancer awareness month, so I hope this September will be showered in gold. I hope that Gold becomes as recognizable and synonymous to childhood cancer as pink is to breast cancer. Or as recognizable as a moustache in Movember.

You can help light the world gold by signing this petition.
http://www.change.org/en-CA/petitions/light-the-parliament-hill-gold-we-will-light-the-hill-gold-on-sept-21st-for-childhood-cancer

It is to light Parliament Hill Gold on Sept. 21st to raise awareness for childhood cancer, to honour those children fighting, the survivors, and the children (like our Molly) who are no longer with us. It has been circulating for over four months now and has just over 1300 signatures. Just 1300 signatures. This speaks volumes. Please, if you can do nothing else, take the time to sign and then get a friend to do the same.

We will be starting our own petition to light the Legislature Gold (which we will post here) and are planning a sister event on the same day here in Victoria. We hope you can attend with us if you are able.

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DavidC <![CDATA[CAMPBELL, Molly Elizabeth “Baby Molly”]]> http://mollycampbell.ca/?p=837 2013-07-22T05:58:44Z 2013-07-22T05:58:44Z Continue Reading]]> MollyBorn November 23, 2010, passed away July 10, 2013 at St. Jude Children’s Research Hospital in Memphis, TN. Although far too brief, she lived an inspiring life. She will be deeply missed by her parents, David and Rebekah Campbell and her siblings, Emma, Owen, Kate and Sara. As well as all her extended family, cyber family and anyone who ever met her. She left an unforgettable impression on all those she met with her glowing smile and truly magnetic personality. The family wishes to express its gratitude to the Team at BC Children’s Hospital and the Team at St. Jude Children’s Research Hospital. Words will never be able to express just how grateful the Campbell’s are to the entire Community of Victoria for their love and support over the past 2 and a half years. The Lord is close to the brokenhearted and saves those who are crushed in spirit. Psalm 34:18 Don’t grieve for Molly as she is free and is as we remember her, a boisterous loving little girl who’s eyes invited you into her heart and soul. Tribute Balloon Release to be held at Victoria Christian Reform Church on Saturday July 27th at 12:30pm. Please bring your own Pink (helium) Balloon. The family is requesting donations to BCCHF be made on Molly’s tribute page in lieu of flowers. Heaven has gained a Beautiful Angel!

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DavidC <![CDATA[Farewell my Beautiful Angel…]]> http://mollycampbell.ca/?p=826 2013-07-15T12:55:26Z 2013-07-15T12:55:26Z Continue Reading]]> Thank you for all the posts, they really do help us a lot. It is very hard to describe how we are doing. We are managing to get thru the days, mostly because we don’t have the option to not! I feel like there is a large portion of my heart that has been taken abruptly and other than taking care of my wife and other kids, I feel numb. I cry multiple times throughout the day and often for no clear reason. Molly creeps in and out of my mind all the time. Sometimes I think about the last two months and how we were robbed of that time and other times I think about the talking to her and how I will never get to hear her sweet little voice again. The quiet times are hard as when we have things to do the dark thoughts mostly manage to stay away. Night time is absolutely the hardest though. We start to think how hard it must have been for our boisterous little girl to have been trapped in her body for the last 3 weeks and to top it off Mommy and Daddy weren’t talking to her or reading to her the way she was used to. It seems so cruel and unusual for a little girl who got so much joy out of life to have to go out that way. I feel immense guilt over the last 2 months or so of Molly’s life. I feel like I should have or could have done so much more for her if I had only known that the end was near. The problem was that each morning I woke up, I said to myself that this was going to be the day that Molly was going to start getting better. I never believed that she could be taken from us, not for one second and the Docs never prepared me at all. I feel like someone should have said something and then we would have been able to at least make her last little while here a little more comfortable.

Yesterday we went to the funeral home to see Molly for the last time. We took her favourite pretty pink tutu and her favourite brown boots as well as a few things the kids wanted her to have with her (pictures, cards and cross necklaces they made for her) The experience of seeing her like that (she looked like a cold wax figurine of someone who looked a little like Molly) was very difficult. Sadly the swelling she had over the last week really took its tole on her.

The sad fact is that Molly had beaten the Leukemia again and was 100% in remission sinse December with no trace of Cancer in her body. This all only compounds our intense anguish. How her lungs could have become so very sick without anyone noticing, still escapes us. It sounds like it will be a few weeks before we get any answers about why this happened and that has been especially tough for both Rebekah and I.

We are extremely thankful for all of the incredible support from our friends and neighbours here in Memphis. You could not have asked for a better surrogate community. Also we would like to thank the ICU team at St. Jude, for loving and caring for our beautiful daughter over the last month. Most of them never got to see Molly in all her glory and beauty but they treated her like the princess she truly was. We are preparing to bring Molly back home to Victoria and we will be forever grateful to our community back there for everything they have done to support us through this journey.

I read this in the funeral home and felt like Molly was telling it to me. She said in her sweet little voice, Daddy, I’m Free

Don’t grieve for me, for now I’m free
I’m following the path God laid for me.
I took his hand when I heard him call
I turned my back and left it all.
I could not stay another day
to laugh, to love, to work or play.
Tasks undone must stay that way
I found that peace at close of day.
If my parting has left a void
then fill it with remembered joy.
A friendship shared, a laugh, a kiss,
ah, yes, these things I too will miss.
Be not burdened with times of sorrow
I wish you the sunshine of tomorrow.
My life’s been full, I’ve savored much,
good friends, good times,
a loved one’s touch.
Perhaps my time seemed all to brief,
don’t lengthen it now with undue grief.
Lift up your hearts and share with me
God wanted me now.
He set me free.

Heaven has gained a beautiful Angel but we will miss her every second of every day for the rest of our lives.

Molly&DadJan2013

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emma <![CDATA[Molly]]> http://mollycampbell.ca/?p=819 2013-07-10T15:20:52Z 2013-07-10T15:20:52Z I am heartbroken to tell you that the beautiful, inspirational Molly Campbell passed away this morning.

Your support has meant so much, and I know the Campbell family will appreciate additional prayers and love in the coming weeks. No family should have to go through this.

-Emma (family friend)

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DavidC <![CDATA[Tuesday, July 9, 2013]]> http://mollycampbell.ca/?p=815 2013-07-09T16:17:40Z 2013-07-09T16:17:28Z Continue Reading]]> Well we have not had the quiet days we had hoped for. Molly has continued to struggle with her oxygen levels, often de-stating and requiring manual bagging to bring them back up sometimes multiple times a day.  Her blood gasses have been difficult to manage. Molly’s lungs have gotten sicker it seems since the fever and bronchial spasm a couple week-ends ago (most likely a second infection that further damaged the lungs). Molly has ARDS (acute respiratory distress syndrome) a much more serious condition than we had initially thought. The doctors are doing everything they can to help support her through this, but there is no treatment, just support until the lungs heal on their own. On Saturday when Molly was not doing well they decided to turn her onto her stomach. This seemed to help improve things but then on Monday morning when they turned her back to her back, it became clear that this move was not going to work. She was turned back to her stomach again but has been having more trouble making up the ground that was lost in all the turning. She is on higher oxygen and vent settings also increasing her risk of a bleed in her lungs or a leak. Molly is keeping all the nurses and doctors very busy and there is rarely ever a dull moment in her room as her blood pressures and stats fluctuate throughout the day. Molly’s body and face have also swollen up beyond recognition. This extra fluid is putting extra stress on her lungs and their ability to oxygenate. We are trying to rid her of the extra fluid but because she has leaky blood vessels and is on high pressures on the vent, on a paralytic, not moving and has somewhat decreased blood flow in one of her veins, it is a difficult task to manage. It is so hard to see her this way. I find myself kneeling next to her bed multiple times during the day, to beg God for a miracle and Rebekah has still not left the hospital. Molly has been on the vent and oscillator for 3 weeks now and for a week prior when she was having seizures. A month of her asleep and paralyzed and still a month without any answers. At this point, still no end in sight. We remain vigilant in our prayers for a miracle for Molly, for her lungs to begin to improve and for her to stay as strong as she is. We are trying to keep our sense of humour and find something to make us laugh everyday and to rejoice in the small things (her hair is coming in and she looks to have grown a couple inches in all this induced sleep). I am having more difficulty when I see other little kids walk or skip the day Molly used to and I find myself crying in the middle of the cafeteria during the busy lunch hour. It helps us to try and spread Molly’s story and to grow her prayer chain as much as we can. thanks to everyone who has been praying for us and getting others to do the same.

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DavidC <![CDATA[Happy Almost 4th of July]]> http://mollycampbell.ca/?p=812 2013-07-04T03:53:38Z 2013-07-04T03:53:38Z Continue Reading]]> It is rarely ever a quiet day in Molly’s room and even the quiet days are busy with nurses in and out turning Molly to prevent more bedsores, taking vitals, blood work, adjusting settings and administering meds. On Monday the doctors decided that they wanted have a bronchoscopy, something that has been a topic of conversation since she came to the icu. Molly had not been stable enough to have it done earlier when it may have provided some answers. Mostly because of the critical state she was intubated in, the doctors were only able to get a very small ET tube down her airway. This tube was to small to use for a bronch, so having this procedure now also meant changing out her ET tube and there are risks involved in this. By doing the bronchoscopy we knew that we may not get any answers as to why Molly’s lungs were so sick because by this point she had been on such a broad spectrum of antibiotics, fungels, and virals that the cultures likely won’t grow anything anyways. So the idea behind doing it now is that if the fluid in her lungs was clear the doctors could at least begin to remove some of the many drugs that she is currently on. After a lot of thought and prayer we decided to go ahead with the procedure. On Tuesday the ET tube was replaced and the scope was done. Everything went relatively well, and the fluid they retrieved from her lungs has been sent for a battery of tests. Molly is still resting and although her lungs show improvement from the initial X-ray they are a long way from being fully recovered. Molly has had to stay on the paralytic so that she won’t work to hard fighting against the vent and keeping her well sedated and paralyzed as been an ongoing struggle as she continues to build up her resistance to the drugs, so finding new drugs is the new plan. The kids are looking forward to celebrating there first 4th of July in Memphis but today enjoyed a little taste of home, a ups package of Mount Royal bagels and French vanilla cream cheese (courtesy of Gramma Didi). If you live in Victoria you can imagine the withdrawals the kids have been going thru. They are gearing up for tomorrows festivities with a Stars and Stripes 5k run this evening and are excited about the fireworks tomorrow night. I feel like I have been only asking God for things lately but today finally we are giving thanks to God for 100% donor 2 cells on Molly’s latest chimerism and the progress that has been made as well as will still be made. We are so very thankful. Today has been a good day and it feels like it has been a long while since the last one of those. We will continue to take each day as it comes and we are hoping all of the excitement of the next few days will take place outside of the hospital and that Molly will have quiet healing days ahead. We are incredibly grateful for all the ongoing love, support, and prayers for our little girl.

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emma <![CDATA[Saturday Update]]> http://mollycampbell.ca/?p=808 2013-06-30T01:50:15Z 2013-06-30T01:50:15Z Continue Reading]]> So on Thursday Molly continued to have problems with her blood gases which lead to lots of manual bagging and suctioning. Eventually it was clear she could not stay on the oscillator and the Docs had no choice but to move her onto a conventional vent. This was a huge step in the right direction but it was much earlier than planed, something that circumstances dictated and the doctors were not sure if her lungs were ready for. It would put her at high risk for a lung leak which would be fatal. By the grace of God and in true Molly fashion she surprised everyone by moving onto the vent at much lower pressures than anticipated and continued to improve her blood gases. Molly was also able to come off the paralitic that she had to be on while on the oscillator. So for the first time in ten days she was able to move her limbs and breath a bit on her own with the machine. This in itself has created a problem because Molly will often fight against the vent leading to much fine tuning of sedation meds. Friday was a pretty encouraging day we felt like we were on track to more stable ground but we realize at any moment things can change and do.

This morning Molly suffered from a bronchial spasm where her lungs contracted so tight air could not get in or out, she was once again manually bagged and given treatments to help relax the muscles. No one is sure what caused the episode, it could have been that she was to awake and panicked while breathing against the vent, it also could have been an allergic reaction to a drug as her face also swelled up to an uncomfortable noticeable state. Molly had a fever for the first time in days and that along with her blood work this morning also showed a big jump that would indicate infection so it could have been caused by another infectious process.

The idea that she may have another infection or that they removed something that was helping treat her current lung infection is a huge worry. Some of the drugs that were just removed are now back in place for extra coverage. Until today Molly’s blood work has been looking good with nearly everything in normal range so this feels like another obstacle to overcome. We feel like whenever we make progress something else arises, but the fact that Molly is on the conventional vent while just 12 days ago they could not even get her on it and we were blessed to be able to get her on the oscillator at that point, really is huge progress all be it slow and extremely stressful.

The other kids have been enjoying a YMCA camp that keeps them busy during the day and Sara is at the hospital with Molly usually colouring pictures in her room and keeping the volunteers busy when she can find them. The kids are very patient and understanding. They are very concern for Molly and are egaer for her to wake up. We continue to pray for Molly’s miracle, for her lungs to heal, for her to overcome this infection and for continued 100% donor 2 chimerisms. Thank you for your support for spreading the word and for your prayers. Go molly go!

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emma <![CDATA[Thursday Update]]> http://mollycampbell.ca/?p=806 2013-06-27T16:21:25Z 2013-06-27T16:21:25Z Continue Reading]]> We have had a very difficult few days. On Tuesday Molly’s blood gases started to travel in the wrong direction and she wound up needing to be taken off the oscillator and manually bagged while they suctioned mucus out of her lungs. Yesterday was more of the same having to manually bag her twice. It is incredibly hard to stand here and hold her hand and not be able to do anything else. I know how scared we have been through all this, I can only imagine how scary it is for her. So we have not made progress forward, more like side to side and back. Adjusting to life in the icu is different, it is always busy in her little room and at times you feel very much in the way. Until now we have been the only patient in the icu so there is always an abundance of nurses and hands to help and Molly is very good at keeping everyone busy.

Even the doctors have not been able to go home as she keeps them on there toes 24 hours a day, and every 48 it is a new icu doctor. Her latest xray shows improvment from a week ago so we are hopeful that after a week of every antibiotic, fungal, viral meds that this virus might be near the end of its course and her lungs will begin to recover and build up there reserve. Molly has not been stable enough to even turn at this point and pressure sores are a concern.Yesterday we got news that her chimerism from Monday is now 99-100% donor2 ( Beks cells) so her doctors are removing her ammu suppression. We have been her before and we have seen how quickly these results can change so even the smallest change is a huge concern. It has been hard to even concentrate on her transplant while we are so focus on getting her to a more stable state, but now we will be praying and anxiously waiting for the results of next Mondays chimerism. Molly is strong each day she fights through something new and we are blessed that she is here with us moving forward. Please continue to pray for our little girl, she is still waiting for her miracle.

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DavidC <![CDATA[Update Sunday.]]> http://mollycampbell.ca/?p=803 2013-06-24T01:40:27Z 2013-06-24T01:40:27Z Continue Reading]]> Not to much change over the last few days, yesterday Molly was the most stable she has been and she tolerated weaning down a wee bit on her oscillator settings and oxygen as her blood gases improved. There has been no change on her chest X-rays and her lungs are still very sick but she has had a few moves in the right direction and for that we are so thankful. Progress is progress no matter how small. Today though she had a bit of a bump when her heart rate and blood pressure were erratic and we had to begin to rule out possible causes. One of which could be seizure activity. So molly is hooked back up to the EEG and will be monitored for the next 24 hours or so. Hopefully if it is seizure activity it is something small that can easily be corrected by medication adjustments. It is just so hard to add another worry to the situation. It was 2 years ago today that Molly received her new cord blood cells and those wonderful cells took us out of the hospital and home for nearly a year and a half. Right now we are in constant prayer that our baby will get thru this and we are looking forward to much happier times to come.

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DavidC <![CDATA[Update, Friday]]> http://mollycampbell.ca/?p=799 2013-06-21T16:24:22Z 2013-06-21T16:24:22Z Continue Reading]]> Still no changes here Molly is still in very critical condition and is heavily sedated. Her morning X-ray is relatively the same as yesterdays. Even though she has not gotten any better, today the docs are talking about trying to lower the pressure on her Oscillator as they feel they need to try push her gently forward and are hoping she will tolerate it and make a little progress. They will decrease the pressure by just a little bit because as the longer she is on it at the higher amounts of pressure, the larger the chances for even more complications. Today is looking like another very scary day for us and we are praying with everything we have that she can fight thru this infection as soon as possible. These past few days have been unbelievably difficult and although today she looks better on paper her chemistry, and CBC look fairly good it certainly does not match the physical condition that she is in. We had not even asked about her recent chimerism test because at this point we just could not bare to deal with anything else, but her doctor popped up the other day to say she is still at 100% donor 2 and the bone marrow aspiration shows no sign of the MML gene. Thank you God! We are so thankful for any good news at this point, but nothing will be better than when we hear Molly is safely on the road to recovery. We cannot thank everyone enough for there prayers and support it is really what is getting us through the days and nights right now.

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