Tag Archives: stem cell transplant

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.

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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