All posts by IntheMiddle

Fewer Trips to Hospital…

Ryleigh was able to get a PICC line yesterday. I am so appreciative to the health care teams in Prince George and Vanderhoof for making it happen. We can now spend more time at home. I was trained so that I can administer her anti viral medication at home. Hopefully it starts to work as she is still in discomfort. 

These are supplies for three days of Meds.  

 Our home made Intravenous Therapy room. Much more comfortable and relaxing. 

An acute, painful inflammation of the nerve ganglia…

 Ryleigh is at St. John hospital in Vanderhoof receiving an anti viral medication to help reduce the symptoms and further blisters and rash from the varicella-zoster virus. It is more commonly known as shingles. She started having discomfort a week ago. After some visits to doctor’s office and emergency as well as discussing with her medical team at BCCH she is receiving the intravenous medications.  She must come to the hospital at 10pm, 6am, & 2pm. It takes between 1.5-3 hours. Her IV’s are not holding probably due to her dehydration and scar tissue from her many IV’s in the past. I have requested she gets a PIC line which is stronger and she will not have to experience all the pokes. She will have to go to Prince George to get it. 

Ryleigh will need to get this med until there are no new blisters. Usually takes 7-10 days … That means 21-30 trips to the emergency every 8 hours. Whew. So I am balancing work and hospital. Which I am preferring better than traveling to Vancouver. Nice to be home going through this. Crossing fingers that we don’t need to travel. 

Ryleigh is having her ups and downs. Pain has resulted in difficult sleeps. She is tired of her body not liking her. But she maintains her witty sense of humour, positive outlook, and hopes that tomorrow will be better. 

A moment of hope…pictures do say it all…

lovely angels   Thanks to the wonderful team Kevin and Laurie at Wallace Studios who allowed us to have this moment of hope last summer when we had some time that was not focused on illness and health issues.  Instead we enjoyed our new back yard on a lovely summer evening.   I have it now placed in a spot in our new house that is visible to remind us what has been and will be again…no matter what. Ryleigh continues on a downward spiral…struggling with maintaining some sort of quality of life.  She spends most of her time resting in her room – sleeping or spending time on her technology.  She is searches online  for odd facts, information, quotes, and videos that inspire or just make her laugh.  Currently, she finds it entertaining to watch videos about others playing video games…I have to admit it is humorous as these are usually young adults and it becomes addicting to watch.  Ryleigh is now off her treatment of steroids (prednisone) and besides some weight gain…it did not help.  Frustrating…as it was always the go to med to get at least some relief. Ryleigh is now on a medication that she has had before.  It is a chemotherapy medication that she was taking orally – methotrexate. The medical team thinks because her digestive system is so compromised that it is probably not absorbing the meds properly.  So, the decision was made that she will need to have it administered subcutaneously – yes that means with a needle.  Which means — I get to be a nurse again and give her the needle.  It stings for quite awhile after she gets the med…but her ability to breath through the discomfort and deal with it all still amazes me.  The hard part is when she says “I wouldn’t mind the discomfort so much if I knew it was helping”. We have noticed no change as of yet and she has had 4 doses….once a week…for a month.  Ryleigh does not see her doctors again until the middle of May…seems like ages from now.  I have been in contact with her BCCH doctors looking at other options. One suggestion is a medication that is not available in Canada without special permission – Thalidomide.  It is the drug that was connected with severe birth defects and was taking off the market.  Currently, it used in a variety of other countries for treatment of leprosy.  As well, it is currently being used in Canada for a cancer treatment for adults over the age of 65.  I researched it and Thalidomide has been used for some patients who have had severe refractory crohn’s.  But again…mostly on adults.  The medication is another hopeful suggestion but I have to admit that we have been discouraged by all the other treatments.  We know that nothing is a cure but I am so hopeful that she can get back to how she is in the picture…painless, happy, and active.   I am spending some of my spring break – researching.  Getting information together for other types of treatment options to share with her doctors.  I am concerned that they have become complacent as Ryleigh has not improved and they are truly stumped.  So my job is to keep advocating with ideas, suggestions, and doing the exhaustive research that her busy doctors don’t always have the time to do. What I have found is that there is a specialist at Boston Children’s Hospital who is familiar with using Thalidomide and some other treatments.  The hospital will do a file review and provide a second opinion.  This may be the next focus for me to help Ryleigh…travel to Boston to have another group of specialists see if there is something else.  I will be discussing all of this with her BCCH doctors… but that is not until May.  So I continue the research….

When all else fails…Go with PURPLE!

Seemingly small events  are worth celebrating!
Seemingly small events are worth celebrating!

Dear Family and Friends,

Saddened is my heart to say that the hope we had for Ryleigh is at an all time low.  Ryleigh and I just returned from another visit to the doctors at BCCH.  It was a deflating trip.  When Dr. Barker, Ryleigh’s  specialist looks at her and looks at the both of us….and says…”This really sucks doesn’t it” both Ryleigh and I knew that options are running very thin.

First, Ryleigh has been getting progressively worse since her last visit and stay last November.  In January, she was resigned to the fact that she needed to go back on prednisone and methetrexate.  In the past, the prednisone was the one medication that would relieve her of the pain and other symptoms that go along with her disease.  Prednisone is very hard on her body and the side effects are hard on her.  You may notice her puffy cheeks in the picture.  Although it gives the illusion that she is looking healthier – it is a facade.  She is getting more and more weak and dealing with pain and fatigue that the average person would find unbearable.  I shared a room with her last week and was disheartened to hear her moaning in pain while she slept.  I realized how much she must be enduring but just trying to keep a positive outlook.

So, what is the plan now….not sure.  I have spent quite a few late night and early morning hours searching the web for ideas, drug trials, experts etc….not much that she has not tried.  BCCH doctors are currently looking into some “new” medications that may work.   Unfortunately they are not available in Canada — so special “begging and pleading” needs to happen from our doctors and most likely will not be paid by pharmacare or extended health…but will cross that road when it comes.

That being said…we are managing!  Our entertainment is our 3 dogs…all amazingly kind, tenderhearted and very therapeutic. Thank goodness for their positive energy — especially when we are needing some comic relief.

I will try to update more regularly….as I know how much everyone cares and wonders. The  positive support and energy from all corners  is so appreciated.   Cheers, Jo

Discharged today and a treatment plan in place…whew

Ryleigh was discharged today.  She is definitely in a full flare as scopes and tests have determined.  The disease is in various parts of her digestive system causing her pain, fatigue, and discomfort.  She is on a steroid again but it is different then the prednisone as it should not cause as many systemic side effects. This makes all of us very happy as the prednisone was brutal for side effects.  So, the plan is for her to try this new treatment and hope that her rebooted immune system will adjust better to the new meds and she will go easily into a remission.  We are looking forward to returning home tomorrow and get back to Chloe and the wonderful puppies of ours….I am sure Ryleigh will be cuddling plenty with our Remy!

 

I find it  odd how comfortable Ryleigh and I were with slipping into hospital mode again.  We have connected with a variety of staff and found it reassuring to see their kind and caring faces as we navigate yet another hospital stay. We figured out what needed to be done. And hopefully Ryleigh will be on her way back to be fun, energetic, and witty self.

 

Thanks for all the kind and caring comments — can get lonesome in the wee hours of the morning and I appreciate the support.  Yippee to coming home..get to work on report cards…much more fun than the hospital (all about perspective).

Ryleigh is back on 3F at BCCH

Chronic IlnessDisheartened to share this news….Ryleigh’s remission has ended and she is now in a full flare again.  Ryleigh started feeling ill mid October and has been getting worse.  We originally hoped it was a flu or some other bug that would go away but as the weeks passed she suffered more and more.  Ryleigh had to stop going to school – which she really was enjoying.  She has been enduring pain and discomfort, severe fatigue, nausea, joint pain, and unable to focus and concentrate.

Ryleigh has been assessed by her doctor and we wait to hear what the plan may be – a holding pattern as her team is not sure what to do with her.  I am frustrated and sad but continue to be inspired by Ryleigh’s positive attitude and sense of humour. So I have to remain focused and hopeful.

Chloe will stay in Vanderhoof to look after the 3 dogs, Jakob, Remy, and Angel. Thanks to Christy and Al who are looking out for her.

Hopefully, this is a short stay — I am really enjoying my new job at NVSS and would like to get Ryleigh back there too.

Will keep posting as Ryleigh moves through this round of treatment.

Ryleigh’s Birthday – Mom Receives the BEST GIFT EVER!!!

happy birthday daughter

After 4 years of pain, hospitals, doctors, surgeries, unknowns, ostomy, stem cell transplant, and not living at home…we celebrate Ryleigh’s 14th birthday with joy and gratitude that her health continues to be improving and that her true sparkly, funny, bright, and carefree self is returning.

She is an amazing young woman that keeps surprising me everyday with:

– her positive attitude towards life,

-her witty comments that are laced with facts she has found deep within the internet,

– her love and passion for writing,

– her daily appreciation that Mom MADE her get a phone!

-her laugh that fills a room with hope and joy,

-her wisdom about things she should not be wise about yet still innocent in other ways

– her loving relationship with her older sister, Chloe

– her easy going attitude embracing her  “differences” like the visibility of her ostomy or her very short haircut and not getting caught up in the artificial standards of beauty many teens have for themselves and others

– her love for life and all it has to offer without being bitter or resentful that she has “lost” 4 years of her childhood.

She is truly the most precious gift!  I am blessed and seldom take it for granted how lucky I am!

The possibilities are endless…

Endless Possibilities
After many attempts and the thought that all possibilities had been explored — we are all on our way to a possible positive outcome. Ryleigh’s stem cell transplant continues to be successful and we are cautiously optimistic…not a cure but a reprieve. Although there is no specific treatment for Chloe – some strategies and coping skills have allowed her to be more independent and do more. Mindfulness and balance have helped me cope through a very challenging experience. Because of not giving up we are now experiencing a break from a medical centered life. Thankfully the odds are leaning in our family’s favour…whew, finally it feels strangely odd to be in a such a positive place but I will take it fully and embrace quiet or loudness, messy or clean, sadness or happiness, frustration or ease, disagreements or agreements, rights or wrongs, work or rest….so much more..but the best of all is that:

WE ARE HOME!!!

I am loving the endless possibilities of what we are dreaming, sharing, and participating in as a healthier family – we are taking time to enjoy the calm energy we all feel. As Chloe, Ryleigh, and myself learn how to pace and find balance – we begin to once again show our true colours that have not been shadowed by health problems.

Chloe – has continued to transform into a confident, wise, and intuitive young woman. She is determined to cope with her pain in the best ways that she can. She can identify and share with us when she is over stressed, stimulated, or just plain tired. We understand now when she needs quiet, rest, and distraction from the pain and other distressing physical symptoms. Sometimes this involves doing a quiet activity with either Ryleigh or myself, watching a television show or movie, cuddling with our precious puppy Jakob, or just hanging out and talking. Chloe is also showing confidence and skill as a young driver. Starting out in Vancouver was very smart (although challenging). Coming home to the slower pace and understanding of rural drivers has her enjoying driving even more. The process is much less stressful than I thought. Chloe is also spending time working with our goldendoodle, Jakob. She finds animal behaviour fascinating and likes to spend time with him working on his learning and training. She is resourceful and is reading up on as much as possible to work with Jakob and make him even better as a family pet (member).

Ryleigh — WOW…I had really forgotten the sparkle and spunk that she has. Her health issues literally were sucking the life out of her – physically, socially, and emotionally. Now, she is eager to do regular activities and is looking forward to starting a more regular routine on Monday. This will include some school work and some simple household chores. Ryleigh’s sense of humour is so witty and sarcastic – I appreciate every sassy comment and factoid that she shares. It is so restful for me to NOT see her in pain and struggle with basic activities. I know she still has a long way to go to being fully rehabilitated but I am sure enjoying the process. Ryleigh is also enjoying time with Jakob and is learning from Chloe how to be the “alpha” and getting him to respond to her commands.

Jo – I am basking in the glow from both my daughter’s as they settle into being back in our wonderful home town. I am also so happy to be back in a town where people are not in such a hurry they won’t smile or say hello. Or wait patiently in a line at the grocery store if I have forgotten and item and run to get it quickly. I enjoyed much of what Vancouver offered us…but I am so grateful for the overwhelming sense of community I feel here: When I wave to students I have taught and they wave back with bright smiles. Or when I get big hugs of welcome back from friends and acquaintances when they see we are no longer in Vancouver but actually home. Or tasting a warm, freshly made apple fritter from the bakery…Or listening to the swans fly overhead … or….so many moments that are such a blessing.
I am excited to be going back to work on Monday. A chance to reconnect with a great group of young people, colleagues, and parents. Teaching is definitely a passion of mine and I appreciate all the challenges and rewards it has to offer. After the major stressors of having critically ill children…being in a school and classroom is a welcome break.

The reflection of what these experiences have taught me and changed me will continue to percolate and will come out in different and I am sure odd ways. I will continue to find stories to share, ideas to reflect on, and blogs to write as we move in another direction on this interesting journey…as long or as short as it may be I am looking forward to

endless possibilities..

Ground control to Ryleigh…you are ready to land…

Dr. Davis: “Ryleigh do you realize what you have been through?”
Ryleigh: “I guess so.”
Dr. Davis: “It is like you have been an astronaut out in space for the last three years. Now you are back.”

Somewhat isolated, limited physically due to gravity and lack of space, and unable to take part in regular activities that is what an astronaut experiences when out navigating the extremes of space. Dr. Davis tried to explain to Ryleigh that her experience is similar to this. I am so impressed by Dr. Davis because he connected with Ryleigh’s logical side and it made sense to her. He wants her to get out and try to normalize again but as her family (and friends) we have to honour the experience she has gone through. It makes sense to me even more now. Ryleigh needs to slowly integrate back into normal middle teen experiences – socially, emotionally, and physically. Chloe and I are so ready for her to get going and be active and engage in some regular activities with Ryleigh. It has seemed like an eternity since we have. But, patience and understanding needs to take hold as we have to listen to Ryleigh and not push too hard to DO. I realize that she is willing to try things when she feels the energy to do so…she definitely needs to work on pacing and choosing her activities wisely as she tires out very quickly.

Dr. Davis: “Ryleigh, what is one thing you really want to do that you cannot do right now?”
Ryleigh: “I want to get a hotdog at Cosco. You see it is the perfect place to test whether I am fully recovered or not. The food is not what I am supposed to eat (because the food is in warming trays and drinks are from a fountain – hotbed for bacteria), the eating space is not clean, lots of people, and I need to walk a fair distance.”
Dr. Davis: “Interesting…okay you can go.”
Mom: “WHAT!!, you mean today, right now? No she can’t be ready for that. We were told it could take 3-6 months. I am not sure this is….”
Dr. Davis: “Sure, why not…her counts are good and she needs to get out and do something normal…just be careful and if somebody is coughing, sneezing, or looks ill…Run the other way!! Her blood counts have stabilized and she is doing well. I think we need to balance our fear for infection with the need to get out and about. Ryleigh has had enough medical stuff she needs to do things that she wants to do (within reason of course).
Mom: “Ryleigh…did you hear what Dr. Davis said, you can go to cosco today! Ryleigh…Ryleigh…hey are you even paying attention?”
Ryleigh: With a smile on her face staring at us with a glazed look in her eyes. “Oh yah…kind of”
Mom: “You were thinking about cosco hotdogs and ignoring us weren’t you?”
Ryleigh: Sheepishly, “Yes, I was…sorry I just am so excited!”

Just what I wanted.  Life is good!
Just what I wanted. Life is good!

Ryleigh is doing remarkably well. She struggles with stamina and outings need to involve lots of sitting or riding in the car but we are getting out. She has accompanied us on a trip to Superstore – where she got some new eye glasses as hers did not fit her anymore (she has indents on sides of her head). I guess this is a good sign that her body is finally growing. We also made a trip to a fast food restaurant for some chicken nuggets (yes McD’s) and their famous fries. It was like we were at a five star restaurant. I am so amazed at the enjoyment of these times although reflection makes me think how tough things were for these to be a highlights.

Ryleigh has not experienced anymore gut pain which has been a relief to all of us. Each day we see her transform into a healthier, vibrant, young lady. Ryleigh is still cautiously optimistic as she knows we have been down this positive path before and it did not end well. I remind her that we need to be mindful about the positive now and not worry about what might happen. I try to hold onto that thought but honestly I remind myself that this is not a cure – just a reprieve. We need to enjoy and live as much as possible…as research shows that the disease will most likely return but it most likely will be years from now. I will take that…she deserves to travel through her adolescence with her family and friends…not doctors, nurses, and other medical personnel. Giving her many more positive experiences to start filling up her “bank” of typical not medical.

Celebrating a milestone…

1958570_10151929318362063_2037107105_n

We spent the last couple of days doing typical things. There were no hospital appointments which was strange but a relief as well.

I found a party store that was absolutely amazing…it was like a party dollar store! I enjoyed the time alone preparing for the evening – the saleswoman asked how my day was going. I had to pause and think about as I was somewhat unfamiliar with the sense that I was doing something somewhat typical.

Ryleigh had a very good day helping decorate for Chloe’s “party”. She was excited to make things all pretty and decorative. She waited anxiously for Chloe to return from her day with her Dad. Chloe got to go to one of her favourite places in Vancouver – the Zoo. She loves animals and is interested in possibly becoming a zoologist to study animal behaviour.

We all played poker. I had a hard time remembering all the values for our “money” which was candy! The girls spent a lot of time laughing and teasing each other – and their Mom! It was all in good fun.

A day that allowed me to recharge as I know that more stressful days as once again around the corner.