Saying farewell…you were loved, my darling Ryleigh

My heart is so burdened and heavy. My lovely, caring sparkle of joy is gone. She has gone to some place where there is no pain or struggle. My heart and body aches with the sadness and feeling of emptiness.  She was an amazing young woman and I am so proud and honoured to call her my daughter.  I will continue to blog as it is so a way to process my thoughts and feelings. Thank you to everyone who had been with us since day one.  We can cry and then move on to remembering and living our lives with purpose and gratitude.  Ryleigh want us to do that.  LOVE to all of those that are caring and remembering.

Books give me energy!

Yesterday Ryleigh spent the afternoon with two of her doctors.  Her rheumatologist and her gastroenterologist.  I have to say that these appointments were the most hopeful.  There are no answers but their was more information which can always lead to a solution.

First, Ryleigh’s gastroenterologist , Dr. Barker discussed with us the results from her 3 scopes she had on Wednesday.  He brought pictures from the scopes which was fascinating to see.  There is definite disease in most parts of the digestive system that they could see.  I asked Dr. Barker if this rules out the possibility of a complex pain syndrome  – unfortunately he thinks she is experiencing complex pain as well.  Her brain has become wired for pain and this just adds another layer to her health care.  She will be continuing with the Thalidomide until the doctors get special permission to try another drug and/or she goes to Sick Kids and they recommend something else.

He is officially referring her to Sick Kids in Toronto but is not sure yet how long the wait will be.  He will let us know when he finds out.  Until then, Ryleigh will continue with doing what she is doing.

Then Ryleigh spent 1.5 hours with the rheumatologist.  This doctor was familiar with Ryleigh as she had met her in 2013 when Ryleigh had the two complications:brain lesion and deep vein thrombosis.  It was reassuring to Ryleigh because this doctor was understanding and supportive.  She empowered Ryleigh by affirming that she was a mystery to all of the doctors and that she is coping fantastically.  I so appreciated her comments as it gave a renewed energy and hope that we can cope and make it through.  There is some discussion now that this might be a syndrome or disease that shows itself within symptoms of Crohn’s disease. Because she has had some odd complications – these might be from another condition.    It was interesting to hear the doctor discuss her symptoms and disease in another context.

This doctor also gave us some ideas for supporting Ryleigh in being more independent.  We will be looking into a mobile device of some sort to give her a chance to get out and do teenage activities.  Also, I was given some ideas to get her some ongoing support in the home and at school to manage her fatigue and pain.  All very hopeful!

This has made Ryleigh feel like she can get out of her room and experience life a bit more.  Usually after her appointments she wants to go back to her room to rest.  Not this time….because we had a wheelchair she wanted to get onto the skytrain and head to Metrotown!  It was so much fun – we had no plans but just walked around, looked at things, and made a few simple purchases (she spent most of her time in Claire’s looking at accessories and of course chapters looking at books).

As we were leaving I complimented her on the positive energy and willingness to go out of her comfort zone.  She looked at me with a big grin on her face and said, “Mom books give me energy.” What a delightful comment coming from a 15 year old!

I reflect on our 3 hours out in the real world. Away from hospitals, doctors, and worries.  I sat on the bus on the way home grateful for this time.  The week started out so miserably.  I was feeling hopeless and helpless.  Not knowing what to do next for my daughter.  My limits have been reached, I thought.  I could not take anymore – emotionally, physically, and financially.  Then, I took a breath.  Asked for help and got through the week.  Ending on the most joyful time I have had with Ryleigh in many months.  Her bright smile, energized manner, and joyful energy just doing what most people do every day – was uplifting and gives me the courage and energy to continue finding moments like this for her.

We come home today.  I am looking forward to the start of school for Ryleigh and myself.  We come home to a community that has wrapped us in  kindness, caring, and support.

Perfectly Purple!

purpleRyleigh had a nice day today.  She got up early to travel by bus to the beauty salon that we found years ago.  We actually met up with our stylist on the bus.  Ryleigh decided to go with purple again and it just brightens her up inside and out!

We then ventured back to Ronald Macdonald House and met up with our dear friends – the Cullum’s.  Nash, Jordyn, and Ryleigh explored a bit and played some air hockey.  Ryleigh was so happy to hang out with them.  It was great for me to sit and chat with Debbie and Warren.  Kindness, laughter, and friendship – a rewarding way to spend a day after a tough couple of days.

Ryleigh and I have had some difficult discussions over the last couple of days.  I feel for her as she is frustrated, sad, and angry.  She had 3 scopes yesterday.  The scopes showed evidence of disease – which was no surprise to Ryleigh.  She still wonders if the pain is amplified by having developed complex pain syndrome but nevertheless the disease is still in a full blown flare.  Reflecting on the issues that continue to face us – I realize that Ryleigh has developed some excellent pain management strategies.  She has to as she is in some sort of pain throughout her days and nights.  Nights are hard –  I am understanding that a bit more as we are sharing a room.  One of the way she copes by watching youtube videos (she follows a bunch of different ones). There is nothing better than to hear her random giggles as she watches them.

We chatted again with the nurse practitioner and her doctor yesterday.  It has been decided that a new set of minds would be beneficial to help look at her medical history and issues now.  So, she will be referred to Sick Kids Hospital in Toronto.  The hope is that a new team will perhaps see things differently.  Ryleigh and I think this is a good way to go.  She has had numerous symptoms and complications that are not typical for Crohn’s disease.  Ryleigh (and I wonder with her) wonders if perhaps the crohn’s disease is actually a symptom of something else.  Dr. Barker also agreed that having a new set of doctors looking at the her files with a fresh perspective might help see something others had missed.  Because she has been under the care of many teams and departments and she has had some many crises…something else might be found.

I also think that her team is so focused and wanting to help her that they may have possibly gotten too focused. Getting ideas from someone else could be the answer.

We do not have any definitive times about when this will occur. So, she powers on.

Making a tough day better…

ryleigh and shake

After Ryleigh’s appointment and a bit of rest we ventured out and about to distract ourselves from the disappointing day. Ronald MacDonald House loaned us a wheelchair and so we went to the Skytrain station and found Ryleigh’s favourite restaurant, White Spot!

We did not rent a car this trip so travelling is limited.  Having the wheelchair has allowed Ryleigh to get out with me.  The bus and sky train are more accessible and easier.

Ryleigh has 3 scopes today. It will be a day spent at the hospital and then resting for the rest of the day.  Tomorrow Ryleigh gets her hair done!  Yes, purple again.

Thanks for all the positive and supportive comments…seems like we are on this roller coaster that never ends!

A Heavier Heart tonight….

heavy heart

I am carrying a heavier hurt tonight – and my heart is hurting.  Ryleigh’s doctor agrees that the new medicine is probably not working.  That Ryleigh is still struggling and that the other medicine that has just been approved she may not be able to use as she is allergic to latex.

He is also convinced that Ryleigh may be struggling with Complex Regional Pain Syndrome.  Yes, that is what Chloe struggles with as well.  He believes it is another complex layer on top of her Crohn’s disease. Ryleigh is frustrated with her body, her situation, and the struggle to manage.  She is still trying to not give up – another challenge for her to figure out.    I cannot really say much more except we are processing the news, not giving up, and trying to figure out what to do next.  Here is the explanation (I believe I posted it before) of what this syndrome is.

Never Give Up

never-give-up-quote-1

This is what Ryleigh told me yesterday — that she is not giving up.

Six weeks ago Ryleigh started a “new” medicine, Thalomid.  It is the same as the the thalidomide that was banned in Canada because of it causing severe birth defects.  It took almost 6 months to get permission and the protocol completed for Ryleigh to try this medication.  It is not covered by pharmacare or my extended health and is over $3000 a month.  With Dr. Barker’s help the drug company was convinced to give Ryleigh compassionate release so we do not have to pay for it (at this point).

This medication has had only one medical study done (in Italy) with 30 children with severe Crohn’s disease.  It had good results and we are hoping that it will have the same for Ryleigh.  According to the research, the Italian children started to experience remission from 4-8 weeks.  Currently, Ryleigh is not experiencing any relief.

Ryleigh continues to struggle with constant pain, fatigue, skin rashes, and swollen and painful joints.  It continues to be heartbreaking for me but I am amazed by her.

We are in Vancouver this week as she has appointments and some tests.  She is going to have scopes done again to see if they can see anything.  Unfortunately, most of her pain is in the small intestine and the scopes do not work to see what the damage is.  She is also going for a 2 hour appointment with rheumatology to hopefully get some help with the swollen and immobile joints.

I am inspired by Ryleigh’s renewed optimism and positive attitude.  In my eyes, it seems like she has turned a corner in her management of this disease.  Although she is not giving up on finding relief – she has decided to make the most of what she has now no matter what the circumstances.   She tried to explain to me her energy as the power points on a video game.  She has a limited amount of points for each given moment.  If she expends these points too soon then she does not have the energy to do the things that she wants too – visit friends and family, play with our dogs, go to mall, go out for dinner…etc. So she banks as many points as she can so she can do these things.   So, I am working on getting her some kind of mobility device (motorized scooter or chair) so that she can get outside and be more active. Although it seems easy – it is not. Paperwork needed to convince extended health that she needs it.  Possibly need a different vehicle.  Choosing the best device…I hope it does not take 6 months like her meds did.

We meet today with her GI doc – Dr. Barker.  Ryleigh is convinced these meds are not helping so we are pushing for the next plan of action.  I am looking into the possibility of a referral to Boston Children’s Hospital for a file review and possibly visiting there for a second opinion as they are the leading Children’s Hospital on Crohn’s disease.

So, we are not giving up.

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….