Tag Archives: coping with a child’s illness

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.

A FUNTASTIC DAY!

Brave and Strong
Brave and Strong

What an outstanding day. I feel like a 10 tonne weight has been lifted off my shoulders. Life has been altered slightly with a few adjustments as Ryleigh ventures into the real world but they are minor compared to the challenges she has faced over the last two years.

Ryleigh woke up today like a typical almost teenager – complaining about not being able to sleep in on a Saturday morning. But she had meds to take, vitals to be done, and visits from the doctors. Grumbling she woke up just enough to do those tasks and then begged me to go back to sleep for awhile. I agreed and went to pick up Chloe and had a tasty breakfast at de Dutch.

When we arrived back to the room Ryleigh was awake and happy to see us. She was feeling energetic and wanted to use her daypass to get out and about. I thought it was a grand idea…we had to wash her hair first. She ventured to have a shower which would be her first with an ostomy. We learned a few things about showering and ostomies — press and seal works much better than plain saran wrap and tape!!!

Ryleigh had a craving for her IHOP pancakes and eggs…she can’t eat sausage anymore as the casings can block her stoma so she opted for bacon. We also went to London Drugs to get her own hair dryer — it is an important tool for ostomates — helps heat the phalanges for the seal on her ostomy piece that sticks to her skin and to dry her ostomy pouch after showering, swimming,etc. But Ryleigh did not want to go home…she felt energetic enough to go to a movie. We headed out to see the Croods…a rather enjoyable family movie. Ryleigh was giggling and laughing but tried to stop herself a her stomach muscles are still healing from her surgery. It was one of those hurts so good moments!

We left the movie theater and had a lovely drive back to the hospital. It was a lovely sunny day — when we left the parkade Ryleigh almost sparkled like a vampire as it has been weeks since she has been out in the sunshine.

It is looking very positive that Ryleigh will be discharged as an outpatient on Monday..I am relieved, excited, and very happy. Looks like we could be back in Vanderhoof in 10 days or so…(I try not to be cynical as I say this..as I have said it before!). Home doesn’t look so far away now.

Small Victories!

Victory #1:
The up swelling of support from friends and family all around the world! The contact and comments of support, love, and kindness help me manage my own feelings of homesickness, fear, helplessness, and isolation. I look forward to seeing the icons that I have a message or a comment from someone I know. Especially when I am in a room with a very grumpy, sick, moody preteen. The escape to the IPAD (thanks so much Dan as it fit in my purse!) is very helpful when Ryleigh just wants me to leave her alone! Also, the expert advice from my dear friend Holly who has a son that suffers from this disease also. Her priceless advice, calm voice, and caring words helped me get through a few darker moments today!

Victory #2
Prednisone – a steroid that helps decrease inflammation. Ryleigh responds well to this medication as it seems to be the only thing that slows down the flare. However, it is not a medication that can be taken for extended periods of time. The side effects are too damaging – the one that Ryleigh is most fearful of is stunting her growth permanently. They are discussing the fact that she may be a small part of the chron’s population that is steroid dependent in order to get better. She is getting the steroid through an IV and as a result it can help her more quickly. Right now it is helping her be more comfortable – maybe it will be the first piece of the puzzle for recovery.

Victory #3
Crohn’s disease is a tricky one to figure out – that is the message I got from the specialist today. I had kind of figured that out but was reassured to hear it from an expert. He confirmed that Ry’s current experience with the disease is not the typical response. He said many kids who get the disease can be treated with the basic medications – all of which Ryleigh is on. When Ryleigh experiences a severe flare like the last few months – traditional medications do not help. But, she is receiving one of the best medications to reduce her symptoms – Remicade. She will get her 3rd treatment tomorrow with double the dose. We hope the third time will be a charm!

Victory #4
Traveling to Vancouver with only my purse and some smuggled underclothes, being without some basic outfits was a bit challenging. It is hard to have intellectual conversations with the medical professionals when it feels like I have been camping out for days! But the benefit of social media such as Facebook has me connected with a classmate from my high school days in Osoyoos. Yes, that was over 25 years ago! She messaged me through facebook and offered to give me a ride to get some basic changes of clothing. We went to the Costco in downtown Vancouver – a very different experience from the Prince George Costco. But, I found some pj’s, some comfy pants, and hoodies. I am now ready to manage in the hospital – no more camping out clothing strategy!! (They frown upon rinsing, washing by hand, and hanging clothes in the hospital room!) Thanks so much Michel, not only was it helpful but a great chance to reconnect and learn about all the interesting things you have done with your life. What an angel you were to help me out.

Victory # 5
The scariest thing about the last 6 weeks or so has been Ryleigh’s reluctance to eat or drink. She feels so miserable that the thought, smell, or sight of food is not something she wants to deal with. Over the last week she has lost 4.5 pounds – something her body cannot lose. The doctor told her today that if she cannot eat or drink more on her own she will need to have a feeding tube – something that she is very scared of and I will admit it makes me feel a bit squeamish. But, even if she only uses it for a few days it will help her get some energy back. All day I have been asking her what she would like to eat, can I get her something yummy to eat – brownie, burger, sandwich, yogurt, ice cream, jello, cookies, apple, fruit cocktail, NO NO NO! Frustrating….but, the wonderful thing about BCCH is that they let their patients choose what they want to eat. She chose her own supper and when it arrived she ate! Granted it was only 4 bites of shepherd pie and a few spoonfuls of peaches but she ate! It is a start – a small victory.

When you are immersed in the poor health of your child – whatever it may be. It can overtake all of who you are feeling like the weight of the world is on your shoulders. Everything can feel unmanageable and that things are going to spin out of control. When the spinning gets faster, I have learned that you need to stop and take a breath and think about the small victories that happen in a day. Each small victory leads to another and then it ends up being a truly victorious day! So I end the day realizing that it was a good one – I look forward to the small victories tomorrow! Until then…..remember to appreciate the small victories in your world.