Week 36 complete

We have completed all scans and now will wait for the results.  We have clinic on wednesday for a physical and to prepare for admit Wednesday evening if all is good.  Her counts on Thursday were 0.5 so as long as she doesn't get sick then her counts should be high enough to proceed.
Thursday proved to be a very busy and testing day.  All 4 kids came with as well as my sister.  Wyatt, Brielle and Cassidy had to see the paediatric orthopedic dr.  Wyatt is done wearing his braces for good and just needs to continue with his exercises and follow-up in a year.  The doctor was impressed with Brielles improvement.  She had issues with her IT band which holds your hip in place.  Excercises alone have helped to resolve this and she was discharges from ortho.  Cassidy will be seen again in 6 months once she is fully walking.
After Cheyenne did fingerpoke and was accessed in clinic she headed down to MRI to begin the long wait.  Her test was scheduled for 11 and she wasn't taken in until 2:20.  All this was with her fasting.  She knew we were watching her closely and she tried her best to get fed.  She asked Sarah for her mastercard so she could go get lunch while they were waiting.  While I was getting dressed to go she made herself a cup of tea.  Fortunately I was on high alert and caught her before she drank it.
Once in the test takes about 1 hour to scan her head and about 45 minutes for her to wake up so we didnt get home until after 4.  A long, tiring day.
Thank you to everyone for your prayers and keeping us in your thoughts.  Once I get any news I will blog.

a few thoughts and an update on Crystal

I was reading my emails today and came across Ann Voskamp's blog.  I would strongly encourage you to listen to the interview of Tiffany, mother to Bailey.  Her daughter, 10, just finished her chemo and has had major reconstructive surgery.  She lost the bottom of her leg to osteosarcoma.  In listening to what she had to say I was touched and went on to read through her blog.  I feel that I should share two particular posts.  It is so hard to put these thoughts into words but she has done it.
How To Serve Those Who Are Suffering (Part 1)
How To Minister To Those Who Are Suffering (Part 2)

For those who have asked about Crystal.  I received a text from Ida(Crystal's mom) who said that they were able to spend about 5 days at home after chemo before having to be readmitted for a neutropenic fever sunday night.  Crystal has one last large dosage of chemo; however, she was refusing to take it.  She gets very sick and has a hard time with every round of chemo.  Please join us in praying that she will finish her protocol of treatment.  If she is still inpatient when we go Thursday I will be able to pop in and see her.  I was also warned that there is C-diff and norwalk going around the hospital. 

Week 35 complete

This has been a quiet ending to the week.  The week started out with a couple appointments, but we had the end of the week with no appointments.  It was such a nice break.  Monday morning was spent in the opthamologist office.  After her exam, it was decided that she would have a reassessment in 3 months time.  Her eyes are healthy and there were no growths seen.  This was a concern of the oncology team.  She does have problems with her vision up close, but the dr thought it best to hold off on giving her glasses.  He was thinking of her well-being, she was rather upset because she thought she would get them right then and there.
Tuesday we were set for a long day.  Cheyenne was NPO (fasting) from midnight and her CT was scheduled for 1pm.  We were at fingerpoke around 9 and because she didn't need chemo we were seen fairly quickly in clinic.  We had her port accessed by her nurse in clinic.  I headed down early to the CT hoping that if they had a cancellation Cheyenne could be seen sooner.  They took her in right away and she was so brave and did her test without sleepy medicine.  They still used the port to administer the contrast dye, and then was deaccessed in clinic after.  The best thing was we were on our way home before her scheduled appointment time.
Because Cheyenne's counts were relatively high on Tuesday we were given the okay forher to go to school Wednesday and Thursday.  She had a great time and it was very quiet around the house without her.
This week Thursday Cheyenne has her MRI which is sedated.  Please keep Cheyenne in your prayers this week as she gets really anxious about sedation.

week 34 complete *pics added

Twas a crazy March break, but we enjoyed it.  And in the words of Cheyenne "I get to be home with my family, Yah".  Although we spent the better past of last week at the hospital for various appointments and such, we weren't able to get Cheyenne's bloodwork done again until Thursday.  Her counts were high enough to proceed so they booked us in for Thursday evening admit.  Because we have Cheyenne accessed in clinic during the day it makes for a pretty quick admit at night.  We were in a room with Crystal for this admission again, however she was able to take an LOA from thursday afternoon until friday evening so I didn't get to see much of them.  Chemo went fairly well, as usual Cheyenne was up and about and very busy.  I had to go to the admitting office for a few minutes and came back to find she had gotten into the food bag, and she found the chocolate.  She also evicted me from the chair and repositioned herself to that spot.  It worked fine with me and I was able to read in her comfortable hospital bed .

Cheyenne and her nurse Jane

We were able to go to Disney on Ice with the kids, we took my neice Emily in place of Cassidy.  Many thanks to the nurses who helped to arrange this and got us all set to go.  Because she has to be hydrated so much after chemo to flush it from her system, I spent the majority of the time pushing fluids through her NG, and giving meds.  The kids all enjoyed themselves and David survived the show!

Yesterday the kids had their Sunday School Treat.  This is their awards day for the previous year of Sunday School.  The kids have memory work and/or songs that they have to sing.  Wyatt did an excellent job, not quite sure why he struggles in school so much because he learned his and Cheyenne's verses.  Cheyenne got nervous once she was up in front of everyone and said her verse hidden behind the others in her class.  I am the teacher for the little class(2-3 year olds), and 3/4 fell asleep during the speaker so it ended up with me doing a solo, Brielle standing up with the microphone and performing, Spencer and Titus were half awake looking out at the audience, and Hannah slept through it all.  Cute none the less.

Today we are heading back to MacMaster for an appointment with the opthamologist to look at her eyes.  The doctors aren't sure of the cause of her eye's wondering and seeing as they cant say for sure if it is med related I would feel better getting it checked out.  Tomorrow we will be heading back for a clinic appointment, fingerpoke and she is scheduled for a sedated CT.  Even though there is a good chance we will do it without the sedation, she has to be prepared(NPO-FASTING), and accessed so they can give her constrast through the port.  This way if she is unable to lie still they will just sedate her but we are praying she hasn't forgot how to lie still since the radiation and her last CT.  Her MRI is next thursday and it will be under sedation.  It takes about an hour to get a scan of the head and neck.  That along with the fact thhat the machine lets off a continuous loud noise, she would never stay still, lt alone in the same room.  Please pray for us as we complete these scans over the next weeks. Because this is her scan round it means she only received 2 chemos on friday, and wont be getting her vincristine weekly for the next 2 weeks.

a little delay...

We went in monday morning for counts and hoping to get ready for admission monday night.  Because we were trying to decrease her number of days in the cycle from 21 to 18 we knew that it was a matter of numbers and there was a chance we were pushing her a little to fast.  Long and short of the story is that she was 0.7 and she needs to be 0.75.  Because it is March break and they were so busy, the first they would see her again is tomorrow, thursday to recheck her numbers and prepare for admit.  This was very disheartening for us on many levels.   For the first time in months I had planned ahead (note: I shouldn't do it as it sets me up for disappointment).  We had babysitters lined up for the admission, Cheyenne had gotten tickets for "Disney on Ice" through the Help a Child Smile for Friday night and the kids were so excited to go out and do something together.  I had plans for saturday morning with the two little girls. 
So we head back tomorrow bright and early for counts and her physical.
We went tuesday afternoon for her pre-op appointment for sedation.  All seemed to go as planned and we got a call today that her chest CT is booked for next tuesday morning.

Week 33 and update on Crystal

We spent the morning at McMaster.  It was an early morning because we had to be at fingerpoke, then register in clinic, and then head over to see Dr MacLean her ENT specialist.  According to Dr MacLean the eye wandering/crossing is not related to the surgery.  His thoughts are that it is med related, or just lazy eyes.  She didn't exactly make the exam easy for him but instead sat there with a frown/half grin, his response was "Thanks Chey now I know your nerves are good".
We headed back to clinic and waited for what seemed like forever.  Today was haematology day so we knew no one in clinic, and the routine was completely different.  Chey's counts were surprisingly low (0.1), so we are on the lookout for fevers.  I was expecting them to be higher even though she is day 12.  This round she never went off her food and her energy level has been exhaustingly great.  So much so that I have been teaching her to fold laundry, load the dishwasher and even doing some schooling with her.  She wants me to teach her ho to make supper, I wish Cheyenne!
The oncologist also examined her eyes, and decided that we would keep monitoring her eyes and wait until next mondays appointment if necessary to see an opthamologist(sp?).
As it stands Cheyenne is scheduled for her pre-admit appointment next monday.  If her counts are high enough(0.75) she will be admitted Monday night(bed space permitting) for chemo Tuesday. I was able to switch her pre-op appointment(for MRI sedation) to the tuesday afternoon while she is inpatient.  Her MRI is booked for March 28th.  We are able to do the CT (chest) without sedation but have not yet gotten a date.
CRYSTAL
I was able to pop in and see Crystal, she was out of isolation(for her safely b/c her neutropenia is so severe) and looked a little better.  Her second x-ray came back same as the first and she has been put on meds to help clear the blockage.  She is still on clear fluids for now.

Urgent prayer request

 This is Cheyenne's good friend Crystal.  I have mentioned her in previous blog posts.   This evening I received a text that Crystal was not doing well.  Cheyenne and Crystal both received there chemo 2 weeks ago when we shared a room for treatment.  Crystal was hospitalized last wednesday for neutropenic fever.  Today she was in exreme abdominal pain and was sent for an x-ray.  The results show thatshe has a bowel obstruction.  Cheyenne had one early on in her treatment but was resolved with laxative meds alone.  They prefer to try this method first due to the risk for infection, and blood count issues.  Last I talked with Ida (her mom), they were waiting on the surgical team for a consult.  Please pray for Crystal and her mother Ida.  She has had such a tough journey.  When we see how hard some of these kids have to fight we realized how blessed we are by how Cheyenne has handled everything thus far.  With each round of chemo your body has a tougher time.  Crystal has 2 rounds left, and struggles so much with each round.  Please keep her in your prayers also.  Thank you 

Week 32 - a little late ;)

Sorry I have been so delayed getting an update posted.  Cheyenne had her 32 week chemo appointment on Thursday.  It was a pretty routine appointment however, the last few weeks there has been a problem getting her blood tested.  The process is automated and every so often the machine will 'reject' a blood sample.  If this happen the blood has to be sent down to the JCC hospital to be manually tested.  This past week was the third time.  I am told that once it start.  This it will continue.  This means a lot of extra time.  it adds an additional 2 hours on of waiting for lab results.  On the average in clinic chemo days her chemo is not dependant of her neutrophil counts so they can still go ahead and order the chemo.  On the days where we are having our pre-admission completed it will effect more so.  Please pray that this will not continue to be a problem.
Over the past few days I have noticed that Cheyenne's eyes are crossing.  Usually not both at the same time however enough times that I thought it strange.  In passing I mentioned it to Andrea (Cheyenne's nurse, after her chemo had been administered) apparently because her meds had already been given she could no longer be assessed.  I was asked to bump up her appointment with Dr McLean (ENT).  He was the surgeon who located the facial nerves during her surgery.  There are a few reasons why this could happen.  The vincristi.  Chemo that she receives weekly causes nerve endings to 'sleep'.  She sometimes gets droopy eyelids, looses sensation in fingers and feet(some kids walk slapfoot, others toe walk), and also causes problems to her bowels.  It could be a problem completely unrelated to the chemo, in which case she would see an eye doctor.  I am trying not to worry about what else could be causing this, and will be heading back this coming Wednesday for her appointment.  She will also be seen in clinic for her chemo on Wednesday.  If her counts are able to rebound by next Monday she will be admitted for chemo inpatient Tuesday.  The next round of chemo will be a scan round which means that she will have a break from the vincristine drug for all 3 weeks.  This will also better help to determine if her eye issue is related to the meds.
Cheyenne has a MRI booked for March 28th.  This is booked under sedation, which means that we have a pre-op booked for next week also(in the process of trying to change the time so I don't have to go twice in one day).  We don't have a date yet but she will also be having CT of her chest.