Monthly Archives: January 2014

Just Winging It…

Ryleigh is admitted and she has started the process…

Yesterday, Ryleigh spent her day preparing and having surgery  to have her central venous catheter inserted.  The catheter is a thin flexible tube that lies under the sking  and creates a safe way into a major blood vessel. The CVC makes it possible for her to have treatments and regular blood work without having needles and pokes.  This allows for less pain and less damage to blood vessels and tissue from standard intravenous therapies. She was in good spirits once she woke up and got settled in her room on 3B.  This will not be her permanent room (thank goodness as it is very small!).  The day before her transplant she will be moved to a room prepared for Stem Cell Transplant patients.

Ryleigh is on a countdown towards the transplant.  The countdown is the time that she has to have her preparation regime.  This is the time she receives the chemotherapy to basically remove cells or parts of the blood system that may be causing her disease and to clear the bone marrow space to make room for her transplanted cells.  Today is -11 and she is receiving a drug called  Anti-thymocyte globulin or ATG.  It was a six hour infusion for her today.  She had a bit of an allergic reaction to it causing hive and itching.  She also had a bit of a fever and severe chills and shakes. She receives this drug Feb 1 (Day -10), Feb 2 (Day -9), Feb 3 (Day -8).  She will feel like she has a bad flu bug and as the days progress her blood counts will drop and there will be an increased chance of infection. 

She will receive other chemotherapy drugs from Feb 3-10 (As we get to those I will explain the type of chemotherapy and side effects). These are Day -8 to Day -1. On Day -1 Ryleigh will be moved to her transplant ready room. 

Day 0 is scheduled for February 11. We then wait until her bone marrow takes those seed cells (stem cells) and creates a newer system so that she can hopefully be chron’s free for awhile.

Ryleigh’s spirits are mixed… which is to be expected.  She is hopefully cautious.  She asked me today what we are going to do if this does not work.  I told her we would search to the ends of the earth for even more specialized doctors and care! We joked that if this had to happen it would be in some place like Hawaii, but she said knowing my luck it might be in Idaho (not sure where she got Idaho from…but it was humourous).

Ryleigh is making more of an effort to be the “captain of her care”.  She is communicating with the medical staff more readily and is being honest about how she feels or does not feel.  I am trying my best to be in the background supporting and not taking over too much. When she isn’t sleeping we have been watching this season of Criminal Minds — makes our problems look like a picnic.  We really enjoy the show and the characters and it is a good distraction from all the hospital noises and action. 

Unsure of how Ryleigh wanted to deal with the next month or so, I asked her if she wanted a plan for each day and know what is to be expected.  She said, “Nope, Mom I just want to wing it! That way I don’t have to worry about what is going to happen I can just deal with what is happening right now.” I would say that she is being mindful of where she is in the moment and not focusing on too much of the What if and so forth.  I admire her for that….I can only be mindful and be in the moment once I have figured out all possible outcomes and a plan to deal with them in my head at least!  I know this is futile because the what if list is infinite but I am okay with that. 

Winging it

Chloe has become quite comfortable in our little apartment.  Even though she misses the two of us, I am confident she is enjoying the independence of staying by herself in the heart of Vancouver.  Good practice for when she is ready to move on to life after high school.  She is managing her pain in such a responsible and thoughtful manner.  I forget sometimes that she struggles with the pain throughout the day as she has learned and is using strategies to overcome the pain and keep on with her day. 

I am not as energetic as I was a year ago – I am sure it is the combination of being one year older AND having gone through a traumatic year already and not really having a chance to recharge.  I am sleeping at the hospital which involves interrupted and short sleep times.  I went back to the apartment today and had lunch and an hour nap just to reenergize.  Ryleigh is not quite ready to be by herself at night but I am confident as she gets used to the nurses and routines I may be able to crash at home for 4-6 hours. 

As we finish Day -11, I am thankful for the incredible care she has received, for Ryleigh’s winging it attitude, Chloe’s ability to go with the flow, and the strength of two amazing daughter who help me be strong!!!

Always Thinking….

images (9)I am thinking about Chloe and Ryleigh  constantly…how my behaviour,decisions, choices, and actions   will affect the emotional, social, and physical development of my girls.  This can be an overwhelming responsibility but one I do not resent or wish I did not have.  I appreciate the gift of parenting and how the never ending responsibility is my reality not my burden. I am thinking about how to help these teens of mine navigate the good, the bad, and the ugly.

Always thinking about appointments:

Ryleigh spent the last two weeks having pre-tests to get a baseline on the health of her major organs like kidneys, heart, and lungs.  As well she had a hearing test and an eye appointment.  She had a dental check and needed to have 4 little cavities filled as they want to minimize the possibility of bacteria to create an infection when she is immune compromised during her transplant.  Ryleigh is also going to meet with the youth health team to come up with a psychological and social plan to help her cope with all of this.

Chloe also had an appointment this past week…it was the first of 4 meetings with her teen pain group called “Pain 101”.  I got to attend this meeting along with parents of the other teens participating.  It was a great start to learning more about how Chloe’s pain gates are not working properly and how as a parent I can support her in learning how to cope.

Always thinking about basic needs:

I have figured out a  routine in managing basic responsibilities regarding meals, laundry, and keeping the house as clean as possible.  As well, I have been working with the social worker in securing some grants for the housing costs.  She has been an excellent resource to help with paper work and finding some money to pay for the extra expenses of living in Vancouver. As well she has guided me towards an EI program for parents of critically ill children.  This is a 35 week program that will pay EI benefits and will help me as my sick days have been used and I was concerned about income.

I am  trying every trick I have to get Ryleigh to consume more calories as her calorie intake is low and when she starts her chemotherapy regime it will be even more challenging for her as her appetite and anti-cravings will become worse. She was hungry last night and I made homemade pancakes for her…she smothered them in maple syrup (real stuff only) and whipped cream.  Now that being said it was 11:30 at night!  But she ate and that is a good thing!

Always thinking about  the what ifs:

What if’s are big one for me right now.  Although this may be a routine transplant for the oncologists in respect to protocol for meds and such…it is not routine because she is not an oncology patient.  Her doctors are caring and very knowledgeable in helping guide us the best they  can.  I have realized that they truly are focused on their area of expertise and have difficulty seeing the connections or concerns regarding her IBD and her ileostomy.  I have become the “global thinker” in this process and work hard at connecting all the dots between her various doctors and nurses and the medical experiences she has already endured.  For example, as I was talking with one of the nurses about slippers for Ryleigh I realized that her appliances for her ileostomy could become a breeding ground for bacteria.  They are worried about bacteria in teeth – should there not be a concern regarding her ileostomy.  The nurses and doctors had not thought of this.  I contacted her ileostomy nurse and they came up with a plan.  Changing her appliance every day is not an option as it can cause skin issues (which can already occur because of her non existent immune system).  This is an example of the what if…. so I am spending time online, asking lots of questions and preparing for situations so that this transplant can go as smoothly as possible.  Infections are going to be her biggest foe in all of this we need to minimize any chance of bacteria or viruses entering her system and wreaking havoc.

What if this is the best it gets for my Chloe? What if the pain syndrome is managed the best that it is? What will her life be about? How will I help guide her through the coping skills needed so that she can follow her dreams and live a full and content life.  My goodness she needs some time to just be and not be involved in the medicalization of her self.

What if the stem cell transplant does not work? What if all of this has been for naught and Ryleigh continues to suffer? I am a hopeful and positive person but I need to process these thoughts to make sure I am strong enough to deal with whatever comes my way…this is how I cope.

Always thinking…

Each thought I have transforms into reflecting  about how my behaviour, decisions, and actions play a key role in how my daughter’s development and how they  see and experience their world.  I try my best to show them qualities that I value: compassion, empathy, honesty, kindness, trustworthiness, intelligence, stick-with-it-ness, and respect.  It is important for me to reflect and think and hope that it is good enough!

Reality can suck sometimes….but then something happens to lift my spirits!

The last few days have been overwhelming and very tiring.  I am exhausted dealing with the various stressors in my world.  I wonder how I can get it together to deal with the next day of “oh boy, what do I have to face today”. I have been dealing with having acutely and chronically sick children for over 12 years.  I have spent over 400 days with both the girls at BCCH.  During this whole time I try to manage (sometimes not as successfully as I would like) my own health,  being a single parent, keeping the important relationships in my life, working full time (and then some), and helping care for others in my life.   I sit here at the computer wondering when I will get a break?    You could call it a colossal pity party. Which I believe are important in life…once in a while a person needs to let go and feel the frustration, sadness, and worry that surrounds them at times.   Then I try taking some deep breaths and reframe.

I do get breaks — they are moments in time that allow me to relax, sometimes laugh, and remember what is truly important. These are the moment that lift my spirits.  Albeit I have to dig deep sometimes but they are there….

Hair cut:  Yesterday I ducked out after Ryleigh’s opthamalogist appointment (She needs new glasses!!) but the rest of her eye looks good, no long term damage caused by the steroids she has used the last 3 years.  I found this lovely salon, got my hair cut.  I am now proud to say I have all my own colour…first time in 30 years!  During the cut, I was so relaxed I dozed off…I was told I did not snore!  That time allowed me to reboot and come home to my daily chores (and continued deep cleaning to prepare for Ryleigh’s suppressed immune system)

Waiting Room Time Out: Today it was a long day going with Ryleigh to four different tests.  They are creating baselines to make sure they have information to compare with after her major chemotherapy regime and subsequent transplant.  At the final test which was a pulmonary function test I had to wait for her as she was whisked away to a room to do the test.  In the waiting room, I was reading my book: only time I seem to get a chance to read fiction is when the girls are in the hospital and I am reading the book Wicked and loving it.

White Spot: Watching Ryleigh enjoy a legendary White Spot burger oozing with ketchup.  Knowing that in a week or so she will not be able to eat restaurant food.

School work: Coming home to a very excited Chloe.  She is getting into school again and in Science is learning about reproduction.  She is learning how cells reproduce and how they work.  She was going at a speedy pace telling me all about it….so much so she has decided to get deeper into the understanding of stem cells and asked to do a special project on Ryleigh’s stem cell transplant.  A spark has been lit and even though she develops pain in her fingers, hands, and arms….she was on fire…wanting to work almost too long at one time…but I am a proud mama/educator.

Hair Falling out:  Chloe informed me that it was starting to happen.  Ryleigh put her hands through her hair and she had a whole bunch of hair on her hand.  So at dinner (yes chicken and mashed potatoes AGAIN as this is one meal Ryleigh can manage to eat) I decide to broach the subject of hair loss.  Bare in mind that I have read on the internet and in books that this can be very traumatic for adolescent girls – losing their hair from the chemo.  So I tread lightly….”So Ryleigh, Chloe tells me that your hair is starting to fall out”.  Ryleigh replies, “It is…it is really neat.  When I pull my hand through my hair it come out in a big bunch” Well there you go..  Later on I asked her what she really felt about it…and she is fine…not like she chose this.  She actually wants to go to get her hair cut and shaved off tomorrow cause the hair all over the place is really annoying her.

My spirits lift and I wonder what I will find tomorrow to help me cope with my reality….

Stage 1…Completed and Successful!

A "Black Forest" Pudding Parfait
  A “Black Forest” Pudding Parfait

Tonight Ryleigh celebrated being back at the apartment.  We made a parfait for her…as her mouth has sores in it and she needs gentle foods to eat as her mouth is hurting.  We are not sure if the Crohn’s is getting worse or if this is chemo related.  Either way, we are enjoying being in a more home like setting!

Ryleigh was discharged today after her very successful stem cell collection.  She needed 5 million cells per ml??  and she produced 12.6 million….whoo hoo, that’s my girl. Extra cells will be stored for up to 10 years just in case she needs them again.  I think it is absolutely amazing that these are cells that come from here.  I learned last night that these cells have protein receptors that allow them to find their way back to the bone marrow to then transform into the cells that are needed after her transplant. I in awe of the science and the innovation that involves this whole process.  I am so curious about it all…I feel bad sometimes for her team as I am always asking questions. Ryleigh just wants to get things done and gets tired of me always asking about what is happening.

She has to go back to the hospital tomorrow for some blood work as her hemoglobin is low and they are going to check tomorrow. If needed she will have a blood transfusion to help get things started. We are also going to get some dates and times for the next stage of this process.  Ryleigh is going to spend the next 10 days or so resting and having tests and procedures done to get ready for Stage 2.

We got home around 3 and I was very tired.  My last night with Ryleigh was a bit challenging as she was trying to sleep with this catheter sticking up from her neck…it was awkward and uncomfortable for her.  So I stayed up most of the night helping her with staying comfortable.  Worth it…and I just came back and had a sleep when I got home.  Chloe was very happy to have us back and I appreciate her positive energy when we return from the hospital.

I also connected with a social worker who is going to help me manage some of the everyday life issues.  She was very helpful and helped me deal with some of the problems I have been having with fair pharmacare and the family residence program.  She is advocating for me and organizing things…jobs I was more than willing to give away.  She is also available to help us through this challenging time….I am so grateful for this service.  The tension in my muscles has relaxed a bit thanks to her meeting with me today.

Found this cartoon….thought it connected well with what we are going through!

Stem Cell Humour.

A positive beginning….finally!

Disclaimer..the medical information included may not be 100% accurate…but I have done my best based on the information shared with me today. Danielle, Angela (lab tech that tests and stores the cells), and Dr. Davis were very patient answering my questions.

I am finally able to sit down and reflect on a chaotic day of waiting and wondering if Ryleigh was going to have her peripheral stem cell collection today.  Once again I have learned the lesson that each medical professional at BCCH has a specific role and at times there can be miscommunication between the experts.  When Ryleigh was admitted on Saturday she was treated as a chemo patient and so there was concern about her blood levels and poor counts.  Both Ryleigh and I asked the oncologist (she is a fellow which means she is a doctor who is specializing in oncology/hematology) if that was not the purpose of the chemo to knock out her mature cells so the bone marrow will kick into gear and make lots and lots of stem cells.  This doctor consistently said no…we need to get the counts up as she is at risk for infection.  So Ry and I were a bit discouraged because we had thought we understood the process.

This morning the nurse who coordinates the stem cell collection came in surprised that we were not in last Friday to have Ryleigh’s count’s monitored….but again I had asked about that twice a few weeks ago and the attending doctors said no, she can come in on Monday.  I have learned that weekends and holidays can cause confusion in care…something I am usually aware of.  Also, she was wondering why the concern for Ryleigh’s counts….in fact, they were perfect…they are looking for the neutrophils to be close to 0 so the special stem cells that are needed will grow so they can be collected.  So…..Ryleigh was ready today for having her cells harvested, in fact it would have been even more ideal yesterday.

In order to have the cells collected she needs to have a special central line inserted so they can get the amount of blood needed.  Unfortunately, the weekend team cancelled the line insertion that was supposed to happen.  She was not going to have a central line which means we lose the opportunity for the stem cell collection.  She was going to have to wait 3 weeks and then start over again!

The nurse coordinating this, her name is Danielle, went to ICU and begged for them to find a time for Ryleigh to have a line inserted (it requires sedation, ultra sound, and x-ray as well as the necessary medical teams.  They were short staffed and busy and they did not think it could happen. But, she has tenacity and went down there a couple of times and explained the situation.  They were short a procedure nurse and she volunteered to do it so they could accommodate Ryleigh.  So, yes her line was inserted!  So she was going to harvest today!!!!

stem cell collect 1
The Stem Cell Collecting Machine (not the technical term!)

As soon as she was completed that procedure (about an hour and a half) they had everything set up in her hospital room to collect the stem cells.  This is the machine that does the collecting: . It is takes the blood out of her body (her total volume of blood) is removed, the stem cells are removed, and then blood is returned to Ryleigh.  She had this happen 7 times and was hooked up to the machine for over 5 hours.  The centrifuge that spins really quickly and the different blood cells sort out because of their weight and gravity.  stem cell collect 4.

Stem cell collect 2
Thankful for the generous Wurflinger’s for the IPAD…it has made this process much easier for Ryleigh.

Ryleigh was in pain after the insertion of the catheter and any tug or pull on the central line was very uncomfortable for her…but she persevered and worked through her pain.  She used breathing and relaxation techniques learned at a kids yoga class that she took years ago.  I was very impressed by her skills at dealing with these types of situations.  Bittersweet pride as I have noticed a maturity in Ryleigh in coping with these really yucky situations.  She has come a long way in learning how to cope and be real with her feelings and then solve using a more proactive approach.  Ryleigh was very patient and tolerant during the harvest. She had to keep very still.

And the end result…..

Stem Cells Collection is a SUCCESS...
Stem Cells Collection is a SUCCESS…

 

So the plan is for Ryleigh to stay in the hospital tonight….she has blood work in a bit.  Her hemoglobin has dropped to 85…they suspect it is going to drop again and she may need a transfusion.  If it is has not dropped too much they might want to wait a few days and see if she can build it up herself instead of giving blood products.  They also need to check the stem cell collection tomorrow and make sure they have enough stem cells harvested for transplant.  She will need her central line in until that number is checked (around 9:30 am on Tuesday).  If there are enough stem cells…Ryleigh will be discharged tomorrow.  She will spend the next couple of weeks having some tests and have a more permanent central line put in….and then the plan will be to start the transplant process at the end of the month.  We are back on schedule!  So it was a day that started with uncertainty and ended up having excellent results!

Cell Factory needs to start working…

Ryleigh has had a low key day. Her blood work came back and her bone marrow is still on a coffee break. Her ANC is still zero and her hemoglobin has dropped a bit. The peripheral stem cell collection that was scheduled for tomorrow has been put off until her body starts to show that it’s bone marrow is creating stem cells. I still have not had a discussion with the attending doctor but it is the weekend….more will happen tomorrow I am sure.

Chloe came to the hospital to visit tonight and we all had a good laugh together over silly things. Ryleigh has not been eating or drinking very much….this is a concern too. I have stocked up on some of her favourites but she says she has an anti-craving for food right now. She just does not feel up to eating or drinking.
So, we are on a holding pattern…waiting for her body to start doing what it is supposed to be doing. Fingers crossed….

Admission to BCCH Early…

Of course things are not always easy with our dear Ryleigh…she will not follow a protocol, likes to keep the doctors thinking…..

Ryleigh started getting a temperature that was 38 degrees or higher on Saturday afternoon. As instructed I called the oncologist on call. She wanted Ryleigh to come in for some blood work but did not seem to concerned.  We came in and Ryleigh had an IV placed in her right hand (a pet peeve for her as she is right handed but it was the only vein they could get).  They did not think she was going to have to use it but she did need blood work so they put it in.  The resident and fellow did not seem to concerned as physically Ryleigh looked okay and she was in good spirits.  They figured she just picked up a little virus of some kind and she would be fine.  Until…

The blood work came back and her ANC count was zero….yes 0.  Absolute neutrophil count (ANC) is a measure of the number of neutrophils present in her blood.  Neutrophils are a type of white blood cell  that fights against infection . Normal counts are about 1.5 or 1500.  They are perplexed as with her G-CSF that she has had this week her blood counts should be higher than usual because they were prepping her bone marrow for producing stem cells for harvest on Monday.

So, Ryleigh has been admitted a few days ahead of schedule.  This might put a bit of a delay on the “harvest”.  They have her on IV antibiotics and a few more days of the G-CSF to stimulate her bone marrow.  I am looking forward to touching base with her lead doctor – Dr. Davis. We have not seen him since the middle of December.  It will be good to hear his view on things and figure out what Ryleigh’s next steps are in getting her better.

Until next time….

Waiting….Waiting….Waiting….

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I have been told in the past that I have the ability to show lots of patience…however, this time my patience is being tested.  It is an odd experience waiting for your child’s bone marrow to stop producing the cells that sustain their life.  As we are now a week into Ryleigh having her infusion of cyclophosphamide, it is odd for me to think about what is happening inside her body.  She has also had four injection of the  granulocyte colony-stimulating factor or G-CSF.  Hopefully this is stimulating her bone marrow to create lots and lots of stem cells so they can harvest on Monday.  Then we have to wait and see when she can actually begin the steps towards transplant. Ryleigh has been amazing…handling the injections with courage and accepting the changes more calmly.  She seems relieved about the process.  I believe part of it is because there is a protocol and she knows what may come next.  Unlike last year, which was a series of mishaps and complications.  Even now, she knows there will be complications but she is aware of the typical ones and can mentally prepare for it.   We have been waiting so long for Ryleigh to get some relief from her IBD that a few more days/weeks should not seem like an issue.  But, I am a little antsy…

Chloe, Ryleigh, and myself are taking this time to rest and prepare for what is to come…and if you know me, hanging out and resting is not an easy task for me.  Chloe and Ryleigh are good role models for me as they know how to rest and keep whatever energy they have reserved for when they need it.  My experiences over the last few years have resulted in going at a pace that is constant.  Hitting the brakes and resting is a challenge…how weird is that?  That being said, I do admit that resting is hard to do when I have so many worries on my mind.  Being distracted by work, chores, or other tasks helps keep the worry away – worry about the transplant, the emotional well being of my family, finances, my own health, Chloe’s health, etc….I try my best to be mindful and take the worry as it comes but sometimes it is so overwhelming! 

Luckily, I have the strength to deal with these overwhelming moments and persevere…next appointment is 8:30 on Monday morning — if Ryleigh’s counts show lots of stem cells — harvesting is a go!  Fingers are crossed. 

Preparing for the stem cell “harvest”…

 

Ryleigh’s time in the hospital was “non-eventful”.  We graded it a B+ as Chloe and I have devised a grading rubric about Ryleigh’s stem cell transplant process – ever the teacher, I am! The doctors that are responsible for Ryleigh were still on vacation so it was mostly residents and nurses that dealt with her.  They were good but definitely oncologists not GI.  There is an issue about dates for her return also….I was  originally told it was going to be Friday…as she is already immune supressed and the added chemo could make her blood counts drop early.  But the nurse and oncologist on call said that she does not come in until the 13th.  Less time in the hospital is good for all of us!

I was surprised by how easily I slipped into the role of hospital mom. I forgot how intense it all is – the number of nurses, doctors, and others that come into the room asking questions and monitoring Ryleigh as she received her treatment.  I have to be “on” most of the time… answering and asking questions, calming Ryleigh down if she misunderstands something, and making sure that these new nurses and doctors understand her Crohn’s and her stress and anxiety.  I am glad that it was only for 24 hours this time.  A slow introduction to this environment was good for both of us… We will be resting lots this week to prepare for her next stay.

I have started deep cleaning the apartment — I am becoming a clean freak!  I know that shocks some of you!  I remember having to do this with Chloe…but for some reason it is more worrisome now.  Maybe because Chloe’s system was not wiped out totally like Ryleigh’s is going to be, or I know more about things…not sure.  But, bleach is now my best friend.  My land lady should be giving me a cut rate on the apartment as I have cleaned things that really have needed it – crack around the faucets, ledges, dusting everything….and LAUNDRY. Laundry is another constant (more than before). We can only wear clothes once, use towels and dish clothes once etc…so I am making trips to the laundry mat every couple of days.   As well, it would be ideal for Ryleigh to have  her own bathroom.  So instead we have to disinfect the toilet and sink area each time it is used.  Fun times…

Ryleigh starts on a 4 day regiment of G-CSF yesterday – another medicine that is administered by injection. The G-CSF will stimulate her bone marrow to develop stem cells so they can be harvested on Monday.   Ryleigh has learned some helpful skills about mindfulness and breathing as she gets the needle.  It makes it so much easier for me as she handles these things so well.  The medicine does cause a low grade fever and we are expecting her counts to continue dropping by the weekend.

We are keeping things low key around our place.  Ryleigh spends her time resting by watching shows on NetFlix, playing on her ipad, reading, and if we can convince her playing a board or card game. Trying to rest as much as possible as we know that the hospital stay will be coming.

Chloe is still learning to cope and manage her pain.  She is so strong learning how to pace herself and manage her pain.  She is doing more school work, helping around the apartment, and coming out to run errands with me.  She gets so tired after she does these things and is making an effort to rest so that she can continue to do these things.

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Slowly but surely…

Today was the first day of the beginning of the process Ryleigh has to go through.  She spent all day in the oncology/hematology clinic getting her first dose of cyclophosphamide – a chemotherapy drug that slows down the bone marrow’s production of cells. This will allow for making room so that more stem cells can be made.  Ryleigh handled the whole day with a really good attitude and was quite upbeat and positive.  I sense from her recent relief and  calmness that she must things  are starting and that she may be getting help to feel better.

First Chemo

The chemo medication is very hard on the kidneys and bladder.  So, she needs to stay in the hospital for intravenous fluids so that she can flush it out of her.

FluidsThey were serious about fluids!!!.

This will be one of a few times she will receive this medication.  Other side effects include nausea (which she already experiences), hair loss, mouth sores, and blood counts decrease.  She will need to stay away from large crowds now and basically be isolated.

If all goes well, Ryleigh will be discharged Saturday afternoon and we can go back to our apartment.  I will need to give her a needle each day of human growth factor.  It helps create more stem cells as well as gets them into the blood stream.  On the 13th of January she will be admitted so that she can have her stem cells harvested – this may take a couple of days.  After that we are not sure what is happening as we have not talked with her hematologist about specific dates for the transplant.  We were told it was going to be soon after her harvest – but now not sure of exact dates.

 After a day of treatment – Ryleigh was very relaxed and wanted something to eat:

Subway yum

“A sub, doritos, and a sprite – this is the best day ever.  Okay – it does not take much  to make me happy!”   Ryleigh’s enthusiastic quote after I arrived with one of her favourite (not the most nutritious but at least she is eating something)meals.

It is now 11:00 pm.  We are in a very tiny room – no space for a cot for me.  I will be sleeping sitting up – but helping Ryleigh make her way to the bathroom every few hours.  She is also starting to feel very nauseous – another long night….good thing I have some experience at this kind of thing.  Until next time….