The past few weeks



Cheyenne enjoying the snow



Wyatt posing for his picture on the GT



Cheyenne getting a tow on the GT



(L-R) Cheyenne, David and Brielle towing Wyatt behind

Cassidy (just celebrated her first birthday) out for a stroll

    We have all been enjoying the snow over the past few weeks.  As you can tell, the kids love to get suited up, helmets and all, and go for a ride.  Because Cheyenne has had extensive reconstructive surgery to her head we have to be extra careful when she is tobogganing and such that she doesn't do any damage, so helmets are a necessity.

   Today was a busy day at the hospital.  Cheyenne had her bloodwork done, her counts aren't high (0.6) but are good considering where she is in her round.  This is her low week, so usually we see 0.1.  Next week she will be in Thursday for her counts and physical and then admitted at night if everything is good, and they have a bed.  Please pray that her counts will continue to recover.  Cheyenne also received her outpatient chemo today, NO tears.

  After we visited with our friends, we went to see Dr Choi, her plastic surgeon.  We were supposed to have a follow-up in December, and in the chaos over the holidays I forgot.  Then she was supposed to see him last week and...I remembered after I had gotten home.  You know how good this doctor is when he tells me not to bother with making an appointment, just stop in and see him when we have the time.  Cheyenne really likes him.  He is very kind and considerate to her and always asks if she has any questions.  My 4 going on 40 year old has taken that to mean what is her opinion of the situation.  She was acting really shy so I was saying to her (thinking she maybe didn't remember him, it had been awhile) that Dr Choi is the one who cut off bumpy.  He was quick to reply that he just closed the hole the other doctors left behind.  Cheyenne told him with a straight face, I know who you are, You're the reason I am here every week!  Nothing like blaming your doctor for your problems.

  Overall we have tried to stay around home and keep everyone as healthy as possible.  Please pray that we will continue to be able to keep it that way.  In order to keep Cheyenne off of the GCSF we need to keep her counts good, chemo on schedule and no fevers. 

Done week 25

I realize I am a little late posting this one but I figured I may as well wait and write about todays outcome at the same time.
Cheyenne was able to get a bed on friday night.  She was second on a waiting list of 17 kids needing chemo.  There is a huge back log right now because there is so much illness being passed around.  The simple runny nose can put these kids in the hospital if their counts are in the low range(i'll get to this a little later).
Cheyenne did well with her chemo this round.  She munched away on a bag of pistachios which was a little unusual because she normally doesn't touch food once her chemo starts.  When the doctor came around to see us on Saturday he asked for one and she told him "NO, You can't put your hands on my food they are dirty".  Not that I let her be selfish, but she has figured out pretty quickly that she can get germs off of her food, now to teach that to others.... 
When Cheyenne was getting discharged on Sunday morning they wanted to give her a GCSF injection.  This is a growth factor that stimulates the bone marrow to make more white blood cells.  Because of Cheyenne's delay in treatment last week for her low counts, this is what her protocol calls for.  We had a lot of unanswered questions and concerns about it so we chose to go back today and discuss further.  I can't even put into words how having to make these decisions feel.  There is no right or wrong decision, and we have to determine how this will effect her today, tomorrow and in the years to come(Lord willing).  I will not go into the details of how we came to our decision, but I would like to ask that you please be respectful of it.  I pray you never have to make such decisions. 
After a lengthy meeting it was decided that we would forgo the GCSF treatment this cycle(3weeks).  We pray that Cheyenne's counts will bounce back quickly as they have in the past.  If Cheyenne ends up with prolonged neutropenia causing delay in treatment, or a hospitalization for an infection then she would start receiving the treatment in the following cycle.   Because I would rather she not have to get the shots(oh yah, I would be giving her needles for 5-10 days each cycle) I really don't want her to get sick.
In order for us to keep Cheyenne as healthy as possible, we need to keep the germs away, so this is a kind reminder to all PLEASE don't visit if you are sick.  Also for the well-being of EVERYBODY don't go to large group gatherings if you know you are sick.  This includes school, church and parties.  These kinds of viruses can be life-threatening to those with compromised immune systems.
Thank-you for your continued prayers and support.

No chemo :(

So we are enjoying a quiet night at home but not because of Cheyenne's counts, instead they have no available beds on the floor.  Hopefully we will be able to get a bed tomorrow evening so that she can receive her chemo on Saturday.
This morning started out early with Cheyenne's fingerpoke and clinic visit.  Fingerpoke went relatively smooth, and then we headed up to clinic for results.  Her counts were great and had sprung up from 0.6 on monday to 3.0 today.  Her platelets and hemoglobin were high and she has grown a little too.  We got her port accessd in clinic because she handles regular staff better than if she got an unfamiliar nurse at admission.  We also got her NG tube put back in.  This didn't go so well and 2 nurses, the child life and myself wore the mini-wheats from Chey's breakfast.  After we got her all cleaned up, she went out and did medical roleplay.  I would love to know the statistics of how many chemo patients go on to be medical professionals.
When we were all done at clinic for the day we headed over to the unit so Cheyenne could visit Grandma Teresa, and I got a cuddle with sweet little Charlotte.  Please pray for Jeremy and Jessica as they wait for Charlotte's test results.  I can think back to the time of the 'unknown' with Cheyenne, and then getting the results.  That wait was so hard, and getting the Cancer diagnosis wasn't easy, or the answer that we had hoped and prayed for.  So please pray that they will soon get answers about Charlotte's health.

No chemo yet

Oops, I forgot to update the blog last night.  Yesterday morning we headed to McMaster bright and early for fingerpoke and clinic.  Cheyenne's counts have improved (0.6 - they were 0.1 on friday when we left hospital) but are not yet high enough for chemo(0.75).  Usually once her counts increase they really jump so they are confident that her counts will be fine on thursday when we have our next clinic visit.  The plan is then for her to be admitted thursday night for chemo on friday.
On saturday when the kids were goofing around Cheyenne accidently pulled out her NG tube.  She is eating great now that we are home so that isn't a concern for me, but we really need it in the medicine department.  Right now it is extremely important that we get her antibiotic into her.  And of course in my effort to be quick at clinic on monday, I forgot to get them to put it back in.  So please pray for us the next couple days that Cheyenne will be co-operative.

We are Home!!!

So glad to be writing this post from home while enjoying a hot cup of tea.  Cheyenne's counts this morning were the same as yesterday(0.1), however because her fever has been gone for 24 hours(usually they make you wait for 48 hours) and her blood cultures have come back negative for the second day they decided to let us go home.  I know that Cheyenne eats better when at home and I would rather her up and about than continuously watching TV from the confines of her bed.  We are on strict orders that we are to bring her back immediately if she gets a fever again, and NO VISITORS.  So we will be going nowhere until monday morning when we have clinic to get her bloodwork checked.  If her counts have recovered we will be admitted monday evening for chemo tuesday.  Please pray that she will eat, and that her counts will recover by monday(must be 0.75 to resume chemo).
I also would ask that you please check out the following blog about a sweet little guy named Collin.  He was recently diagnosed with neuroblastoma, and started his chemo on boxing day.  Although I don't know his family personally, they are from the Waukesha Wisconsin assembly.  Collin(4yrs) is the big brother to Cooper(15months) and Luke(5weeks).    Please keep them in your prayers also.

thursday evening

Cheyenne's has improved as the day went on.  Her temperature was good throughout the day.  The real test will be if it stays down through the night.  That is usually when it creeps back up.
We had a few accomplishments during the day.  Cheyenne ate 1/2 a rice krispy square(totally not nutritious but its a start).  She is starting to drink more, and she has made it out of the bed for a couple hours.  Granted we can't leave the room so she is limited to pestering, and rearranging furniture.  This evening she was standing at the door trying to get anyones attention she could.  Please pray that Cheyenne's counts will go up so that we can stay somewhat on her chemo schedule.  If her counts take too long to recover she may need GCSF.  This will bumpstart her bone marrow production(this in essence is her immunity).

Out of Isolation :)

This morning isolation was lifted.  All of Cheyenne's priliminary results came back negative.  Urine, NPS(checking for influenza A), chest x-ray and blood have shown no reason for her continued fevers.
Last night Cheyenne spiked a fever again.  She has had low grade fevers this morning, and her counts today were lower(0.1-immune system almost non-existant).  This means she will not get chemo tomorrow ( has to be at least 0.75).  We are still in a private room for this reason.
Thanks for your prayers and kind messages.  Cheyenne loves getting them!

little update

Cheyenne is starting to perk up and feel a little better.  I judge this by her taking a few bites of food, and starting to talk again.  She slept most of the day, but when she finally woke up she was her happy cheery self.  So happy to report that her last temperature was normal.  If her blood counts go up by tomorrow morning then they will proceed with chemo on friday.  Please pray that her counts recover and she continues to be fever free.  Hopefully I will have answers to her labs and swabs by tomorrow afternoon.

A fever

Just a quick note to let you all know that Cheyenne was admitted last night with a high fever.  She is in isolation and they are testing her for possible infections.  They also swabbed her checking for Influenza A.  She is not talking and just sleeping alot.  Her fever is still up even though they have started her on antibiotics and she is on tylenol. 
Please keep us in your prayers, that they find a cause of her fevers and that her blood count will recover so that her chemo can proceed according to schedule on friday.