Home-july 29

We are home, and still neutropenic, so having to be extremely cautious and watchful of the fever returning.  As of yet they do not know the cause of the fever.  Cheyenne goes back to the clinic on Thursday.  She will have her bloodwork done and depending on the results, will let us know whether or not she will be admitted Thursday night to start her third round of chemo.  Please pray that her blood count will increase so that she can start her next round of chemo as scheduled.

week 6- A fever

Well, we almost made it through this chemo cycle without an unexpected hospital stay.  Wednesday Cheyenne was so perky, was up and about feeling herself.  She spent some time outdoors playing.  Then yesterday she slept alot, and lounged about.  When she asked me for her medicine early and wanted to be hooked up to her feed early so that she could go to bed I knew something was up.  I took her temperature and realized she had a good fever going on.  So we came down to emerg last night. They told us within half an hour that they would be moving her upstairs, but they had some bed changes to make.  We still aren't quite sure whats going on.  So far all that we know from her bloodwork is that she is neutropenic(this means a private room).   They are culturing her blood to see if they can find the source of the fever(infection).  Cheyenne has quickly made herself at home, Cassidy too.  I'm glad they have each other for company, it takes Cheyenne's mind off of herself.
Until Cheyenne has been fever free for 48 hours they won't discuss discharge, and if her blood culture is positive then it would mean a longer stay.  At present she is on IV antibiotics, and she has received her chemotherapy for today.  On the bright side, I was able to go upstairs and visit my adorable new nephew, Brantley, and my sister Sarah.
Thank you so much for keeping our family in your prayers.

week 5

Cheyenne went for her week 5 treatment on Friday ( i'm sorry it has taken so long to post).  She also went down Tuesday to get her bump checked out because it had burst open.  The surgeons are keeping an eye on it and we are keeping dressings on it to prevent infection, but no decisions have been made yet as to whether or not they will remove it shortly.
Friday morning we headed down early, with high hopes that we would be one of the first to be seen and get home by 11.  We were at blood clinic for 8.  We had a new lab lady, I won't even go in to detailes about how wrong it went but every parent in clinic friday complained about her, so it was BAD.  We were up to clinic by 8:30(they start seeing you at 9) and were #3 so it wasn't to bad.  Chemo took a little bit to come up from pharmacy, she had her port accessed, and were heading home around 11:30.  Cheyenne's bloodwork was pretty good but we are expecting her immunity to get low this coming week.  She is feeling well, she has her periods of lethargy but that is to be expected.

July 16

I know I have taken a few days to update but it has been slightly crazy around this household for the past few days.  Cheyenne started her second round of chemo friday(3weeks in each round).  She did relatively well, then again we are slowly figuring out what her preferences are and little things can go a long way.  We were fortunate and were able to have a private room this time.  This works well not only for the extra space for Casssidy's playpen but you don't have to worry about disturbing room mates if Cheyenne is up through the night. 
Cheyenne was able to come home saturday around noon.  Our nurse knew that Cheyenne does better once home and the doctor was able to visit her first for rounds.  By the time supper rolled around we were all back together.  Then the kids are so excited to see each other that it is hard to get them settled into bed. 
Finally got them all asleep and crawled into bed...BEEP, BEEP, BEEP..Cheyennes NG tubing kept kinking meaning it would set the alarm off(8x during the night).  Last night wasn't as bad(3x), but tonight it took about 30 minutes to get the pump to stop beeping and saying there was a blockage.
Yesterday Cheyenne's bump(tumour) started to have some serous(clear) drainage, Today she bumped it while playing and it started to bleed.  Actually the skin started to separate.  I notice it and didn't say much, however Wyatt had to inform her "your bump is popping".  And the hystrics started....
Seeing as the office was closed by the time this took place, I will call first thing in the morning to let them know this has happened.  In the meantime I am to keep it clean and dry (and infection free).
To all who have prayed for us over these past months, thank-you.  Please pray for Cheyenne to have peace with the changes that are taking place faster then she is able to adjust at the moment.  We are set up for homecare, but at the moment, it is terrifying for Cheyenne to have new faces continually.  Today she met Jen, who we will hopefully be able to always have.  I know that I am able to do most things she would require, but it is still nice having that extra set of hands.
In the weeks to come, as Cheyennes immune system goes up and down, I would please ask that anyone stopping in, please call first.  A simple cold could prove dangerous for her.  I would also ask that if anyone has come in contact with the chicken pox, and could in any way be in contact with Cheyenne, PLEASE let me know so that we can keep her at home.  Chicken Pox is a serious illness for someone on chemotherapy and could require her to be hospitalized.
Thanks

July 12

Cheyenne had her week 4 lab work-up and physical today.  Her bloodwork was great so she will be admitted tonight for hydration and will receive her chemo tomorrow.  I know this is short but just figured I would keep you all updated.  Thanks

July 10

The last couple days have been increasingly better.  Last night Cheyenne had a small portion of supper, we made a huge deal of it.  She was running around having great fun with the kids.
Today, she asked if there was leftover salmon in the fridge.  She ate half a portion.  Tonight she asked if we could have sweet potatoes and maple sausage(i know, its a weird combination), she inhaled them.  Its hard knowing that in a couple days we will start this cycle all over again.  I am hoping that it will be easier for her this next round.  Maybe if we have the bowel issue under control it wont be such a drain on her.
She is getting very co-operative about her flushes, meds and tube feeds.  She asked me today if we could go to the doctors tomorrow and get them to take out the tube now that she was eating.  I had to explain that she has to keep eating, and take all her meds in her mouth before the doctors will take out the NG tube.
We are 3 treatments in and her hair is really coming out now.  She wants it to stop falling out now.  She has a bare strip down the middle and the bottom back and she thinks it is funny.  I think Brielle wishes that too.  She keeps coming to me to take the hair out of her mouth.  She can't figure out where it is coming from.  But like the doctor explained, when the hair falls out that means that the treatments are being effective elsewhere.
Today the kids played and fought, well mostly aggravated each other.  It was a very normal day, and I could tell Wyatt and Brielle loved having the old Cheyenne back.  And Cheyenne got no special treatment from them, yet you could see the sparkle in there eyes as they wrestled and played the afternoon away.

July 9

We are so enjoying being back at home(for a little bit).  Cheyenne gets readmitted this week on thursday night for hydration and then gets her large dose of chemo friday.
Cheyenne is hooked up to a feed pump for 12 hours at night.  The first night wasn't so successful as the alarms kept going off and it would shut off.
Last night was better, we read the instruction manual and started her much earlier in the evening anticipating trouble.  Her pump is also portable, it all fits in a little backpack.  Note to self-ensure the tubing is not kinked before going in to church.  The alarm went off a couple times.  Its amazing how quickly they adapt, she wants to learn how to run the machine.  She is not as self conscious about the NG tube as she was at the beginnning.  The other kids asked about it at first, but soon as they accepted it, she was fine.
Cheyenne is starting to pick at food.  Yesterday she ate a few bites of salmon and a yogurt for lunch and she had a small bowl of watermelon for a bedtime snack.  We aren't really limiting her sweets, however she only gets them AFTER she eats something of value.

Chey's hair is falling out by the fistfulls, and yet you can't really tell until you get up close.  It appears to be thinning.  Cheyenne was promised that she could buzz Daddy's hair, when the time came she didn't give Wyatt much choice either.  I forgot to take a picture when they were all done, but can post that later.

The first couple 'chunks' coming off



The soccor ball effect



Cheyenne's idea of a finished product



Cheyenne taking a swipe



Wyatt trying to do it himself

Daddy finishing the job

July 7

Cheyenne is hopefully going to be discharged from hospital today.  We are waiting on CCAC to set up equipment for her feeds.  The feeds are going to run for 12 hours (night) that way she can run around during the day and hopefully pick at food as she wants.  We are anxiously awaiting the discharge order.  CCAC is confused by our address(we alway have issues because we are on the border), which means we have spent a couple hours on the phoone back and forth between Waterloo and Hamilton explaining that we do indead pay taxes to Hamilton, therefore we should be receiving services from Hamilton.
Cheyenne is feeling a little better.  She has given us a few small smiles and a little talking here and there.  This morning she coughed up her NG tube so they had to replace it.
We have a large # of meds that she is now on for a bowel routine and they will be following her closely in this regard.
Cheyenne hair has started to thin and fall out during the past couple days.  It really gives new meaning to the verse in the Bible that 'he knows the number of hairs on our head'.  We are all looking forward to getting home and spending time with all the kids and each other.
I'm looking forward to a good cup of hot tea!
Thank you for all who have called, emailled and sent your kind words and thank you so much for your continous prayer.  We serve and awesome God who can do all things.

July 4

Today was a long but successful day.  The meds are starting to work and so are her bowels.  Cheyenne wont be allowed home for a couple days yet as they need to get a cocktail of meds that will help her bowels from becoming sluggish from her chemo.
Today we got moved into a private room due to her being neutropenic(her white blood cell count is low).  Its nice to have the privacy.
Cheyenne is starting to perk up.  We got a couple grins and she is talking again(she zomes out when she doesn't feel well).  She also started drinking and eating ice chips today.  It seems minimal but she hadn't touched anything unless being coaxed for the past 4 days, today she asked!
If all is well she will get her vincristine chemo dose tomorrow.
We appreciate your continuos prayers and support.

July 3rd

Today proved to be a long day.  They no longer feel that her bowel is twisted but that she has extreme constipation as a result of her one chemo med, nauseau, vomiting and also this hot weather.  I understand this to be a real struggle with chemo patients.
During the night she was transferred from emerg up to surgical floor.  Once the oncologist saw us this am she arranged for us to be transferred ober to the oncology ward.  (They like to keep their 'kids' to themselves)
Today she had a NG tube inserted(goes up her nose and down back of throat into stomach).  She will receive her meds this way, as well as TPN feeds once she comes home.  Cheyenne has lost about 4 lbs in the past 10 days, and because she has no desire to eat this will help to boost her caloric intake. 
Before she can come home she must be having bowel movements and tolerating food.  At this point they feel it will probably be a few days, but things are always prone to change. 
Cheyenne is not herself at all, no smiles, no chatter.  This was the most of a grin I got all day.

She is holding a little toy she got from the nurse for being 'co-operative' while getting her NG tube placed.
Good-night, will be an early morning ;)

A twist....

It has been a crazy past few days.  Cheyenne has been taking her meds much better thank to Uncle Peter's gentle wisdom (and patience).  We have figured out that you don't rush Chey with her meds, this is one of the few things she still has control over in the ever changing blur of days. 
Cheyenne has not had an appetite for a few days now and starting saturday has been complaining of stomach pain.  It seemed to come and go, but she was  up alot during the night.  We were constantly back and forth with her to the bathroom, with no success.  I made a call to the on-call doctor who suggested that her meds may be causing constipation and suggested a few things we could give her and do to relieve the situation.  I tried hard to get her to drink fluids, but could get little more than a few mouthfulls into her.  Then she started vomiting up what she was eating.  Again we made a call and it was suggested that we head down to ER and get checked out.  Our doctor let them know we were on our way which means things are so much faster once you get there.  They did a couple x-rays and have determined that she has what appears to be a twist in her bowels.  She has been admitted and they will give IV fluids and keep her from eating anything.   The thought is that the body will sort itself out.  If it hasn't resolved by 3 days they will talk surgery.
Please keep Cheyenne in your prayers, that she will have as little pain as possible, and that this may resolve in a timely manner.
Thanks and goodnight