Monthly Archives: February 2014

Small Gestures = Spirits Lifted!

It is almost the end of Day +15. Ryleigh’s counts have not gone up. I eagerly await the 7AM nurse change so that I can get her blood counts for the day. At 4:00 each morning she has her blood drawn so the results can come in early. But, no changes for over 15 days….such a stress to wonder when it will start. We are all eager to get the recovery process going. Ryleigh is managing well. She is resting when she needs to, starting to do some physiotherapy to help get her body moving as she is very, very deconditioned, working on eating healthy, and trying to spend some time with her sister. Ryleigh’s fun way of seeing the world is coming back as her Crohn’s has settled down thanks to no immune system. The big question will be to see if the Crohn’s will stay away when her body starts to generate those white blood cells and neutrophils. But for now I am grateful for her sense of humour, witty comebacks, and her making sure we are technically correct on various facts during our discussions.

The last few days have had a few moments that have lifted all our spirits and helped us take some time to enjoy and laugh.

Moment 1: Games and Laughter
I find that Ryleigh is quick to say no and refuse to do things. It is going to take time for her to believe that her body can handle activities and take risks to do a variety of different activities. Chloe comes to visit Ryleigh and works hard to not get upset if Ryleigh does not want to do anything. However, Chloe knows her sister well and brings out crafts to do or games to play and Ryleigh will then be interested. Hanging out together and laughing with each other is truly a great way to lift all of our spirits.

Moment 2: Snow
Yes, Vancouver got snow! It was really beautiful. Especially after the dark quiet of Ryleigh’s room the past couple of weeks. But a couple of nurses decided to add something else to the view:

Karen, a positively wonderful nurse who looks cares for Ryleigh as a whole child - not just a sick child.
Karen, a positively wonderful nurse who looks cares for Ryleigh as a whole child – not just a sick child.
Karen and Kari - busily building a snowman for Ryleigh and for every other child on 3B who had an outside window.
Karen and Kari – busily building a snowman for Ryleigh and for every other child on 3B who had an outside window.
The finished snowman that melted today but allowed us a couple days of joy and laughter.
The finished snowman that melted today but allowed us a couple days of joy and laughter.

Moment 3: Visitors
We had some visitors come to the hospital. Apparently with the break for the Olympics they decided to use their time off to make some youngsters (and their parents) forget some of the challenges they are facing.

Laughing with Ryan Stanton, Mike Santorelli, and Alex Burrows
Laughing with Ryan Stanton, Mike Santorelli, and Alex Burrows

The visit was surprisingly uplifting for us – Ryleigh is not a hockey fan at all. She does not understand why grown men get paid lots and lots and lots of money to chase a puck on ice, with a stick, and on skates. “Mom if we took all the money spent on professional sports there could be enough money to stop hunger or to save a continent like Africa.” Hmmm she has a point. She did not want to meet them. She was tired and really had no connection with them. Now, me not so much…I am a hockey fan – Oiler Fan mostly- but I was not going to go without a picture. They came by…we raised the blind and they called to Ryleigh, knocked on her window, and said Hello. Ryleigh was slightly embarrassed but she definitely was giggly and it made her chuckle just because they were being silly. She was not very happy with me as I opened the blind but I told her Karen (her nurse) made me do it. We all had a good chuckle and she enjoyed it. She also got some autographed cards from the them. I think I will keep them in a safe place – I know of some Canuck fans in my family!

I have been very exhausted and my body is starting to show it. Cold sores, pulled leg muscle and/or tendonitis, headaches, and difficulty sleeping. These moments over the past few days have given me energy to keep going. I made sure that I found opportunities to reset and gather up some energy to get through each day. I cross my fingers that tomorrows blood counts are better…thanks everyone for your positive comments and thoughts. They lift my spirits too!

It takes time…

Waiting for Ryleigh’s white blood cells and neutrophils start showing in her blood counts is really like watching a pot boil. We know it will happen – it just seems to be taking so long. To help see what is happening each day we chart on her big calendar.

Keeping track of Ryleigh's Counts
Keeping track of Ryleigh’s Counts

Her hemoglobin has stayed at mid 80’s for three days now so no need for another transfusion of red blood cells. Her platelets are dropping but that is okay. Still 0 for white blood cells and neutrophils – once we see some sort of count then we know that her bone marrow is starting to use her stem cells to generate again.
I have to say I am a bit antsy to get those counts up. I am getting a bit run down as I am not getting much sleep and am taking care of two teens in two different places. Lots of shuttling back and forth and keeping up with all of the responsibilities. Not getting great sleep has been hard on me too. But, I know that it is not going to be forever so I make the best to try and take small breaks, rest when I can, and be as efficient as possible with my limited time.
Ryleigh is on a schedule similar to an infant…makes sense since she is a teenager AND her cells are in infant form waiting to grow and develop. She spends most of her day/night sleeping and when she wakes up she has an incredible appetite. This is without the help of steroids which used to artificially make her hungry. She basically eats two meals a day. One being a brunch and the other supper. Lately she is eating pancakes and omelette for brunch. Pyrogies, pasta, or meatballs/mashed potatoes for supper. Because she has no immune system at the moment – her body is allowing her to eat without pain or other consequences. Her immune system is not attacking her digestive system. It is a change for all of us to see her eat like a typical kid.
Ryleigh has been so tired that she has not wanted to visit or socialize even with Chloe. A couple of nights ago a transformer blew in the neighborhood of the apartment. Chloe called me and wanted me to pick her up as she said she was scared — in fact she was fine but she was concerned that she could not charge her phone! So, I went to pick her up and she came for a surprise visit. It was exactly what the two of them needed. Ryleigh was so happy to spend time with her sister. We were all glad to hang out together. It was fun to be silly, laugh, and have the girls make fun of me! Just like old times!

Mom, you cannot take her home! She is staying here FOREVER!!! I am not letting go!
Mom, you cannot take her home! She is staying here FOREVER!!! I am not letting her go!

Explaining with pictures!

For Chloe and Ryleigh.
For Chloe and Ryleigh.
Ryleigh spends about 80% of her day sleeping. And she likes it DARK!
Ryleigh spends about 80% of her day sleeping. And she likes it DARK!
Proper handwashing for at least a minute.  Handwashing has become a time for reflection and contemplation.
Proper handwashing for at least a minute. Handwashing has become a time for reflection and contemplation.
Handwashing  3-4 times an hour equals very chapped and sore hands.  This seems to be the best cream to help soothe my skin.
Handwashing 3-4 times an hour equals very chapped and sore hands. This seems to be the best cream to help soothe my skin.
Storage is at a premium on 3B. This is my dresser, supply closet, and  general storage.  Everything that cannot go into Ryleigh's room is in here.  Her room is right in front of the nurses station...really fun leaving my room in the morning and seeing a crowd of nurses. I grab my stuff and head to the washroom as quickly as possible to avoid jokes about my bed head!
Storage is at a premium on 3B. This is my dresser, supply closet, and general storage. Everything that cannot go into Ryleigh’s room is in here. Her room is right in front of the nurses station…really fun leaving my room in the morning and seeing a crowd of nurses. I grab my stuff and head to the washroom as quickly as possible to avoid jokes about my bed head!

“One Tough Cookie”

One Tough Cookie

Ryleigh finished her last round of chemotherapy yesterday. Because this is a protocol oncology is not familiar with they are not sure when her bone marrow will engraft. However, the nurses and doctors are amazed by her strength and how well she is managing through the pain and other yucky symptoms. She is maintaining her ability to eat which is good. Today she has requested PICKLES!! I have no idea how she will manage eating them with her mouth full of sores. Maybe the morphine is doing the trick! Ryleigh is sleeping lots but no one can fault her for that – I would probably sleep the whole time just to get through it faster.
Ryleigh’s counts are still low. She will need a blood transfusion today as her hemoglobin is low again. Her oncologist today told me that Ryleigh is doing remarkably well and in her opinion this treatment is the most difficult thing a body can go through. Ironically, so far, this has been the most predictable and less stressful hospital stay we have had in a while (hopefully I did not jinx it). There have been no surprises and we just have to wait for her blood counts to go up.

I know I have mentioned it before but adults need to watch and learn how children and youth deal with obstacle in their lives. The surface behaviours may seem annoying and difficult to deal with as adults. But mining deeper past Ryleigh’s snappy comments and frustrations I see coping strategies that show resilience and thoughtfulness. Ryleigh is great at dealing with the here and now — she has learned to shelve worries and anxieties that do not pertain to today or the near future. She manages by distracting herself from the worries by reading, playing games on her ipad, and of course sleeping. She is the essence of being mindful whatever the situation. I appreciate her willingness to show frustration and anger when times are tough. It seems that we frown upon these emotions in our society although they are important. I am learning from Ryleigh the truth behind all of our emotions and that being whole hearted means embracing all parts of who we are and how we feel. Keeping in mind of course that we do our best to not be mean spirited in our expression of these emotions.

So hopefully my posts will continue with few surprises and positive news.

Day +4

It is Day +4, four days after the stem cell transplant. Times are still challenging but we continue to make it through each day…looking forward to each new day as we get closer to Ryleigh’s stem cells finding their way to her bone marrow and creating a whole new immune system.
White blood cells (WBCs)are a part of the immune system and help our bodies fight infection. They circulate in the blood so that they can be transported to an area where an infection has developed. Neutrophils are the one of the body’s main defenses against bacteria and these are the most common WBC in the blood. In order for Ryleigh to begin stepping down from isolation she has to have neutrophils at 0.5 or higher for at least two days.

Each morning (4 am to be precise) Ryleigh has blood work done to check her “counts”. These counts are the indicator for how her body is responding to the transplant treatment. Today her counts were:
WBC = 0.1 should be 3.9-10.2
Neutrophils = 0 should be at least 1.0
Hemoglobin = 85 (was 75 yesterday so she had a blood transfusion) should be 117-149
Platelet Count = 161 should be 180-440

Ryleigh is following what is to be expected after mega chemotherapy, transplant, and more chemotherapy. Right after the transplant she was doing really well – chipper, talking, eating, and witty. This is my Ryleigh…coming back to us. But the doctors warned us that it was going to get worse before it got better.
Yesterday things started to take a downwards turn…mouth sores are causing her difficulty with eating anything but soft foods. Ryleigh loves her ketchup but finds it very difficult to eat…but she cannot give it up as her Kraft Dinner would not be the same without it. I took a look in her mouth today and it is worse than I imagined. She is one tough cookie as she is hanging in there. She is getting some pain meds for it which is helping.
Two days ago – Ryleigh spiked a fever (which was expected). Tylenol is helping but she is often shaking and shivering, hallucinating, and sleeping. The last two days the room has been very dark – like a cave. She has not been up much and when she is she needs help.
I have tried to get chores and errands done the best I can. Yesterday, I did not get out of the hospital at all. Chloe had to fend for herself at the apartment – I sure miss her on the days I don’t get to see her.

Chloe is a breath of fresh air when I can break away from the hospital and spend some time. Usually it involves errands or chores but at least we can hang out with each other. Chloe continues to show such maturity and responsibility. She is learning to manage her pain and be more active in her own life. I am so proud of how she is handling the way that our life continually changes. At times, she is wise beyond her years.
Parent’s guilt is never easy to cope with. I struggle with balancing my time for managing the basics and then spending time with both the girls. Chloe does not spend much time at the hospital as Ryleigh is not up for visiting. So, I have to leave Ryleigh to spend time with Chloe. When I am with one, I feel badly I cannot be there for the other. Thankfully, they both realize that I struggle with this and do not hold any resentment towards me or each other.
I spend many moments in Ryleigh’s (recently dark) room wondering if I am doing the best for my girls. I find so much of it hard….making sure I remain calm and patient when I just want to yell and scream. I find it hard (yet helpful) to talk with other parents – they are amazing but yet we all are so tired and frightened for our kids. I find everyday tasks so tiring – shopping, cooking, cleaning, laundry, banking….I find it hard to see Ryleigh all cuddled up in her blanket looking so sickly and she just wants to be left alone. I want to hug her, hold her, comfort her but she is too miserable to have anyone around her. I find it hard to say goodbye to Chloe as I come back to the hospital. Knowing that she is by herself trying to be strong yet yearning to have her sister (and her mom) back home for company and friendship.

We expect the next weeks to challenge our family…but each day we know that this shall pass and we will be on our way to happier and more relaxing times. Even if it is for a moment I will embrace the positive times with my whole heart.

Transplant Super Star!

Still without my own computer – should be back in the next couple of days. Have to quickly write something…before my day starts and it is non-stop for me. I am working harder now then I have ever worked. I am on call all day and night. Right now, Ryleigh is feeling okay as the steroids and other meds have supressed her immune system have given her some relief from her Crohn’s disease. The steroids not only give her some relief but increase her appetite. As a result I am down at the 2B kitchen 4-5 times a day. Preparing food is a time consuming task as I am following extreme foodsafe expectations and using plenty of press and seal wrap to surround all sealed prepared food so it can be wiped down before entering the room. Handwashing happens anytime her room is entered – at least one minute of scrubbing with antimicrobial soap – my hands are a bit raw. But I will make sure I can prevent as many germs as possible entering Ryleigh’s room. Ryleigh has two blankets that she finds very comforting. I have to wash them every day. Clothes have to be washed and put in cleaned plastic tubs to enter the room. Ryleigh also prefers to have me do the caring chores that need to be done to keep her germ free. She does not like having me outside of the room as it seems like nurses and doctors seem to come when I am not there. At times they communicate things that might stress Ryleigh out. Each switch of shifts changes the way each nurse/doctor does things. Ryleigh gets a lttle frustrated when expectations change day to day. Too much for her to handle right now. So, I quickly take breaks so I can be back in her room. Luckily, Chloe has been very understanding. I get back to the apartment at some point during the day and try to do errands as I am out of the hospital. Whew, tuckers me out just reading it.

The materials needed for super cleaning anything that goes into Ryleigh's room.
The materials needed for super cleaning anything that goes into Ryleigh’s room.

All of our things that keep us occupied in our room.  Wiped down, bagged, and will be wiped down before entering the room.
All of our things that keep us occupied in our room. Wiped down, bagged, and will be wiped down before entering the room.

These are the stem cells.  Ryleigh got three bags of these!
These are the stem cells. Ryleigh got three bags of these!

Transplant went really well. Ry has responded well and feels hopeful.
She is positive and engaged almost all of the time. I am seeing parts of the “old” Ryleigh appear as her Crohn’s has been suppressed from the different medications – hoping this will continue as we move through the next couple of weeks.

The doctor warned me that things are going to get harder before they get better as we wait for engraftment (stem cells enter bone marrow and start to develop regular cells). Her white blood cells and neutriphils are at 0 so she is at extreme risk for infection. It takes 10-14 days for engraftment to normally occur. We will wait patiently during this time.

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Chloe and Ryleigh are truly best sister friends forever….

"Sisters function as safety nets in a chaotic world simply by being there for each other." Carol Saline
“Sisters function as safety nets in a chaotic world simply by being there for each other.” Carol Saline

I apologize for the delay on posting updates.  As usual bad timing seems to be my path in life….my computer decided to not work for me…the keyboard was selective in letters I could use and as a result my writing became quite cryptic! So, the computer is getting fixed and I am using the computer kiosk’s on the 3rd floor of the hospital. Getting time to sit and reflect away from Ryleigh’s room is challenging and I definitely appreciate the convenience of my lap top. Hopefully it will be fixed this week.

The best thing so far has been the continued strengthening of the bond between Chloe and Ryleigh. Ryleigh looks forward to anytime she can spend with Chloe — they are both so grateful to see each other that typical sibling rivalry or bickering does not happen.  They truly are friends and enjoy hanging out together.  I look at them and have a sense of relief that they have each other and it is one less stress for me to have to figure out — refereeing sibling quabbles is not my ideas of a good time!  Instead the giggles, fun, and discussions are better and way more relaxing!

 

 

Ryleigh has continued to receive her chemotherapy.  Her counts are slowly decreasing and we are preparing for her transplant on Tuesday.  Today we are organizing items for inside her room and outside her room.  Her room will be totally “clean” of as many germs as possible.  We have to clean off every item we bring with special disinfectant wipes (industrial version not lysol wipes from the grocery store!).  Laundry will need to be done every day – including her favourite blankets and pillow as she has to wear clean items everyday.  We have to as well so I will be doing laundry frequently.  Ironically she is most at risk for the bacteria and viruses that she already has.  Once all of her cells are depleted the “germs” think that they are free and clear and can come out and play! 

I have met with the dietician and they should grant the certification for food safe as I have learned all about shopping, preparing, and cooking food that is as limited in germs as possible.  There is a kitchen on the second floor that I will be using to prepare meals for her as meals should be served to her within 30-60 minutes of preparation or bacteria will start to grow.

Ryleigh’s transplant is on Monday and then things will get “interesting”.  Because she will be at risk for infection it will be worrisome and difficult.  We are hoping that she will go through with no serious issues and be discharged in a month!  That would be awesome…but not holding my breath. 

Ryleigh is finding her voice and is being more open and honest about how she feels and how she needs to deal with all of this.  She let us know that socializing and having discussions for long periods of time is exhausting. She finds it very trying to answer lots of questions and interact with the support team members like physio, psychology, child life, and nutrition.  So I have advocated that she be given the basic information, she does not need lots of explanations, and then for her to set a goal or plan.  She has been focused on her physical self and is slowly understanding how her feelings, thoughts, and emotions play an important role also. 

I am finding balancing all responsibilites still challenging but getting into a bit of a flow and schedule and figuring out best times for availability of laundry machines, showers, and kitchen as these are all shared. Spending some down time with Chloe is important too and I usually go home and tidy up a bit and have a visit and coffee with her.   I am also learning to nap once in a while when Ryleigh naps as sleep is in small chunks through out the day and night.  Brings me back to the days of having babies…empathy for those young folk in my life who have just had wee little ones — Alex & Nolan — Jenn & Anthony CONGRATULATIONS on the arrival of your precious little girls!!!. Remember the “chores” can wait as sleep and taking care of your own health is important so you can then take care of your child. 

All three of us have talked about the normal activities we might be able to do once Ryleigh gets better – walking our dog on a trail, riding bikes, going to school, doing chores around the house, visiting friends, sleepovers, and get togethers.   We are glad to be coming home as spring begins to start in Vanderhoof.  Having some hopes and dreams about the future is important as we head into a month of isolation and difficulty. 

Lots of love and laughter to everyone who is thinking and caring about us!  We truly appreciate all the support. 

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Have to get sick before I get better….

That is the simplest way to put this whole transplant experience.  Ryleigh has had a rough few days…but as each day has progressed she seems to be less affected by the medicine in this first cycle. 

This is the third day of the first cycle of medicine – she is receiving intravenously a medication called   Athymocyte globulin (ATG) is an infusion rabbit-derived antibodies against human T cells. It is technically not a chemotherapy drug but one that is used to help suppress the immune system and the cells that may cause rejection of the new cells being transplanted.  She reacted to it really badly on Friday. She spiked a really bad fever, chills, shakes, and a rash.  They gave her more meds to help but she was really miserable.  The next day she said it was like having a really, really bad flu.  

Yesterday she slept mostly during the day as she was being infused the second time.  This time they increased the time she was to be infused to hopefully minimize the side effects.  It may have worked a little bit as she had a slight fever and hives and she said it felt more like she had a really bad cold.  However, her long sleep during the day caused her to stay up until 5:30 in the morning!  I tried to catnap through a few hours but our room is very small and she still needed help getting to the bathroom and such. We both got some sleep from 5:30-8:30 and then it was time to get up for doctors, bloodwork, etc.  She spiked another fever this morning as well as having some belly pain. They are worried about a bug but I think it is the Chron’s acting up a bit more than usual.  

The third day, today, was much better as they changed up some of the pre-medication to prepare for the allergic reaction.  She still go hives and felt yucky but she said she felt a bit better. She is having this same infusion tomorrow and then she starts a chemotherapy drug on Tuesday. Tomorrow I meet with members of her team: dietician, child life, and social work to build a plan for her when she goes into isolation. 

Ryleigh had a better day and  had a craving for a steak and cheesecake.  Yes, Ryleigh, let me whip that up in the mini kitchen with a toaster oven and microwave! So seeing that I need to get as many calories in her as possible I went to the Cactus club and ordered a steak (no sides) and a piece of cheese cake.  Chloe and I went to pick it up…wouldn’t you know it, I forgot that it was the Superbowl…the place was very busy.  Chloe and I decided to have a bite to eat while we were there and then took Ryleigh’s steak and dessert up to her.  She ate a little bit of the steak and about 2/3rds of the cheesecake.  I think this is the first time Ryleigh has had steak since 2010? She did enjoy it!

Yummy Cheesecake!

 She is with Chloe right now watching a video in the room. They kicked me out for sister time – which I admit I was a bit envious…I wanted to spend some time with the girls during which they were both more happy, fun, and playful.  joyful.  But, I also appreciate the need for them to have some precious, positive time together – they are such good friends.  They are good for each other and Mom just gets in the way!   

I am struggling with the juggling of all my jobs and responsibilities but I am thinking that will become easier as we begin to readjust to hospital life.  Chloe is really trying to step up and be a help…however, I caution her not to do too much as she pays for it at night or the next day with excrutiating pain.  I need to remind her to pay attention to her body and remember what she is learning in her time at counselling and pain group.  The best thing she can do is be with her sister so that I can be free to do some of the chores that need to be done.

Ryleigh is very apprehensive to have me gone from the room.  She wants me there but somewhat invisible until she needs me.  If I leave she wants me back as soon as possible. She worries that something will go wrong or that doctors will come and she will have to make a decision about something.  I know that this is a result of all of the happenings that happened last year.  We are working with her to develop some coping skills for these worries. But really, I can’t fault her for needing support. 

For some reason, I thought that this would be easier than last year because we know the steps, the risks, and the plan. But in some ways it is more difficult because we know the steps, the risks, and the plan.  The idea that we made a decision to make her sick so that her body can get better is such a confusing concept.  Yet, that is exactly what is happening to her.  She needs to get even more sick and compromised then she is now…so I breathe and try to not think to far ahead and be in the moment.  I let myself process the fears and anxieties I feel and then try to be strong and calm.  I am told I need to take time for myself or I may get run down.  Frankly, I am passed being run down…but I have learned to take mini breaks (kind of like a timbit instead of a doughnut) – I indulge in something that reenergizes me even if it is for 5 minutes. It can be a walk to the parent lounge to read a gossip magazine – now those famous people really have troubles! Or I read a book, colour, breathe and meditate in my chair (the IV has an interesting rhythm), blog,  a walk outside, sip a glass of sparkling water as I imagine I am sipping on a sparkling cocktail at a poolside somewhere warm,or….the list can be endless.  I cannot fit in much more then these moments but they help me reconnect with the strength of purpose and resolve that I need to have.  It is not easy and I am not saying I don’t have those moments when I am in the car weeping wondering how I am going to endure at least 30 more days of this.  But I get out, feel the sun (yes SUN) on my face and walk back to Ryleigh’s room ready to face whatever may come our way…Take time for moments and remember sometimes things do have to get worse before they get better.