Monthly Archives: March 2014

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…

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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.

Chloe is turning 16!!

Chloe is very excited…She is turning 16! Unfortunately, this will be the second year that she will spend her birthday in Vancouver. She is making the most of not celebrating with her friends but is especially happy because her Dad is going to make the long drive down with his partner, Tina, to help her celebrate. We are planning a birthday party in the apartment eating appetizers, playing “candy” poker, and having cake from a delicious French bakery.
Also, Chloe has been studying the driving manual and she will be taking her written test to get her L. I just have to be okay with her driving! I cannot believe that time has gone by so fast. I will say that she has definitely had her share of life experiences crammed into a short period of time. She continues to show such strength and determination no matter what comes her way.

I am so proud of her! Happy Birthday to my kind hearted, caring, intelligent, and lovely daughter!

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It has been +31 days since Ryleigh had her stem cell transplant. We have been back in the apartment now for a week since Ryleigh’s discharge. Ryleigh is still on step down isolation so when she leaves the house she needs to wear a mask and be careful when out and about. Ryleigh has completed two appointments at the oncology clinic for follow-up. So far so good regarding her blood counts and she is also doing very well as she has not shown any signs of infection or fever. She is getting tired of me asking her to take her temperature – we have negotiated to twice a day unless we notice something different in the way she looks or acts.

Chloe and I are wanting so badly for the energetic Ryleigh – however, she is dealing with continued fatigue. She is extremely fatigued which the doctor said would be an issue. She struggles with regular activities and we are learning how to help her pace throughout the day to recondition. Her physiotherapist has given her some exercises and ideas to help strengthen her muscles and endurance. As her mom, I am finding it challenging to know when to give her a loving nudge to do some of these activities or just let her be. I am sure most parents of teens struggle with this same dilemma but in other circumstances. Trusting your teen and giving them some independence and autonomy but yet still giving direction when needed.

We are still waiting to find out when we can come home. Ryleigh’s attending physician, Dr. Davis, will be back on Monday and we can discuss the plan for coming home. Currently, she is required to be checked twice a week – for symptoms and her blood work. It will be moved to one day…a week and then hopefully once a month which means we can come home. We will wait and see.

The moment we have waited for…

Rare flowers
Ryleigh was officially engrafted on Tuesday and that enabled her to get some time out and about on the third floor. She ventured to the playroom that was reserved for her as she could not be with anyone else besides Chloe and I. Chloe and Ryleigh played air hockey and Wii…enjoying time together laughing and just having fun. It was pure joyfulness at it’s best.

In order for Ryleigh to be discharged from the hospital I had to make a new friend….Chester.

My practice buddy...who knew I would learn so many nursing skills! My mom would be so proud.
My practice buddy…who knew I would learn so many nursing skills! My mom would be so proud.

I had to learn how to properly change Ryleigh’s dressing for her central venous catheter or CVC, heparin lock her line (so the line won’t clot) , and change the ends of the line. In order for Ryleigh to be let out of the hospital in my care, I had to be able to demonstrate that I could do these three things. The nurses spent a few days guiding me through the steps and I was lucky enough to have Chester to practice on.

This morning I did my final “test” and demonstrated my new learned skills so that we could get the green light to be discharged. I packed up the room and it took 3 trips to the car to get all the stuff we had brought out of the room. I left the hospital this time feeling confident that this was a good experience (for once) and that Ryleigh is completely without pain and discomfort. It was worth all of the sacrifices the three of us have made. I am proud of how we all managed during this challenging time.

Ryleigh requested lasagna with all the fixings.  I was more than happy to honour her request.
Ryleigh requested lasagna with all the fixings. I was more than happy to honour her request.

When things go well it feels great! It has been surprising and I will admit strange that there were no major issues during Ryleigh’s stem cell transplant process. After all the heartbreaking news the last few years it is a different place for me to be feeling so relieved and confident that Ryleigh is going to get some relief. But, I will not question or waste a moment of the positive energy that currently drifts around the apartment.

Staying for six weeks on the oncology unit was bittersweet. I met some amazing families facing tremendously difficult situations. I met parents that were kind enough to let me into their lives and take the time to talk and visit with me. Being so far away from my family and friends…I really appreciated the time they took away from their children to listen to my ramblings and support me as I took a break from room 8. Many of the families experienced good news and results from the treatments they were getting. But sadly even all the amazing care, treatments, and love cannot keep a child with their family. It was heart wrenching to get to know a family and then in one night find out they had lost their little boy. The strength and and courage that families face here is so inspiring. I am grateful that I have two lovely, teenage daughters that have survived. I will never take that for granted and will spend the rest of my life cherishing and loving every precious moment I have with them.

Ryleigh is now a post transplant outpatient. She goes for her first follow up appointment on Monday. We spent our first night having enjoying our home cooked dinner and just being in each other’s presence in the apartment. Although her counts are good (somewhat normal) she is dangerously immune suppressed. One of the doctors explained that it is because her bone marrow is producing brand new cells that may not quite yet know their job. So if she is faced with bacteria or viruses her body may not know how to handle things. Until they get settled and her immune system is working well again she has to be careful. She has certain foods she cannot eat, I have to cook using strict foodsafe practices, and she cannot go out in public without a mask. We also need to keep the house clean and dusted. Chloe was a real help in getting the final things done on the apartment last night– dusting, vacuuming, and bleaching floor, counters, etc. I also got our car detailed — got rid of all possible contaminants.

All is well in our world right now…great to be able to say that. At least 4 more weeks in Vancouver and then we are planning on heading home!!! Blessed we are.

Picture this..

Ryleigh:

* focusing on reading a book long enough to enjoy
* feeling of calm, pain free, relaxing in the comfort of her hospital bed
* learning to embrace the feeling that she may not be in the middle of an IBD (Crohn’s Flare)
* joking and laughing; sharing her insights from her book
* being independent of any lines attached to her which equals freedom to do things for herself
* not even realizing the importance of such a tiny moment in her life

Mom
* Taking a picture that reflects a moment of peace
* Breathing a sigh of relief and enjoying this moment of perfection
* Feeling a overwhelming sense of pride in the strength my daughter shows with each obstacle she faces
* Hoping for more times like this
* Smiling from the inside…out…pure joy being in the moment; mindfully taking in all the positive energy
* Thanking all the wonderful people in our life for supporting us to this moment
* Welcoming any twists and turns knowing that there can be moments like this…

Appreciating the quiet moment of things going right for a change.  Able to concentrate and focus on reading.
Appreciating the quiet moment of things going right for a change. Able to concentrate and focus on reading.

Time to Celebrate!!!!

Ryleigh’s counts are through the roof! Her bone marrow has engrafted and she is on her way to starting step down tomorrow. We are hoping that she will be discharged by the end of the week.

Her immune system is back in working order. She needs to take baby steps with getting out of isolation that is why it is called a step down. Her body is more susceptible to infections then before. One nurse described it similar to a newborn baby – it will take between 3-6 months for her body to start building up immunities to common infections again. That is why we have to be careful preparing and serving food (I have learned lots about food safe). As well we need to keep house tidy and clean to limit the amount of germs that she is faced with. As well we need to avoid crowded spaces and people with colds, flus, etc. When she goes out she will need to wear a mask. Apparently she can still attend movies, go to chapters, out for a bite to eat as long as we go during the down times…when these places are not packed with people. Movies…matinee on a Wednesday, chapters in the mornings, etc. I think we can manage that as all of us get a little overstimulated with large crowds.

Ryleigh has been doing so well – the last thing I want is for her to get a serious infection and be hospitalized again.

We will be sitting down with the team this week to discuss discharge. I have to learn how to change her dressing on her central line, be able to “hep” lock it, and keep it clean. She will be discharged with her line as she will be needing routine blood work and possible blood transfusions as her hemoglobin is still low. As well, there does not seem to be a clear idea of what follow up protocol is to be followed for Ryleigh’s after care. Because this is an experimental procedure they are unclear about what will happen in the future. I think I pinned down the fact that she needs to stay in Vancouver for at least 3 weeks for follow up tests and such. What happens after that is yet to be determined – there was talk for monthly visits. But that is all up in the air. I need to pin down a doctor to get some answers.

The big question is “Did the transplant put her Crohn’s disease into a remission?” Time will be able to tell us this…now that her immune system is back…we will see if it is calmed down and not “attacking” her digestive system.

I am crossing my fingers that we are making our way home the last week of March! We are so ready to get back to a somewhat everyday life. But for now it is time to celebrate!