Day Off

Today was the first day off in a long time.  Sarah didn't even step foot into the hospital today!  That was awesome.  

The day started out at 6:30 with Cael softly crying, what a sweet sound.  We spent a lot of time cuddling our little baby, he is so precious.  For this blog post I am just going to post a bunch of pictures.

Elaine Arrived at about 11:30, she hadn't seen Cael in a month.

Me and my baby!

Cael and his Mama

They were a little hesitant to pose for a picture, but this is Cael's Oma and Opa, and Cael's Mama and Dada.  Its artistically blurry.

 

Sarah and her real favourite sister, Its going to take a lot to outdo what Elaine gave to Sarah.  

RED DEER

My Mom and Dad stopped in Red Deer so the brother's could see each other.

It is so awesome to see them together. 

Opa and Linden.

Bro's before anything!

No blog tomorrow, its the sabbath.

Discharge

Discharge, the good kind!

Today at about 1:00 Sarah was officially discharged from unit 57.  From now on she will go to the hospital as an outpatient.  I will let you know more about this on Monday after her first appointment.  We didn't even get her counts today, but I am sure they were fine, or else they would have called us back in.  

I guess Cael was reading the blog last night and got a little jealous, so he begged and begged Opa and Oma to take him to Calgary to get his turn with Dad, he got lucky and got to spend time with Mom too!  It was fantastic to see the little guy again, but it is so unbelievable how fast he is growing.  We saw him a few weeks ago and he seems so much bigger and stronger.  We even went out to dinner with him, he was a good boy and my Dad, Mom, Rachelle, Ewic, Sarah and I got to enjoy a nice meal, and show off our beautiful babe.  Its almost 11:00 and he is about to fall asleep.  We will have an enjoyable time tomorrow with him as well.  I've got to get to bed because he might be up really early.

G'night

K

A Day Apart

Hey,

Well today started early.  Kurt and I went to the hospital by 8:15am and I got in bed to wait for the nurse.  Kurt was then on his way to Red Deer to spend the day with Linden, while Karen was coming to the hospital and arrived at around 9:30.  The nurse finally came in and did my blood work and hooked me up to my IV.  Dr. Chaudry came in with good news, and said that tomorrrow he wanted to check my cyclosporin levels and if they were good, I would be discharged and become an outpatient.  I was excited to hear that because I was going crazy in that hospital room.  On Monday, I have an apointment at the BMT clinic with Dr. Shaefey.  The start of a new phase of this journey, exciting!

Once Karen got to the hospital, we just hung out in my room till I was able to leave for a pass again and go to the apartment.  At 1:45, we made our way over, and just hung out and watched TV.  Karen enjoyed the quietness of the day, even though I wasn't much company.  I didn't eat very well today and supper came back up, which hasn't happened in three days.  Hopefully things are better tomorrow.

Karen left shortly after 6pm, and I was alone until Kurt came home.  It's now 9:30, and he is still not home.  I hope he is here soon.  It good to have a break for eachother, but I still miss him.

Platelets went up to 120 today!

Sarah

Sarah & Karen

Dear Readers,

I don't think Karen and I picked the best day of the week for driving, the fog was pretty bad on the way to and from Red Deer.  I had a great day in Red Deer with Linden, he was very clingy but I enjoyed every bit of his "clingyness."  I think we were within 5 feet of each other the entire day aside from his nap.  It was awesome to be with him all day but the day was missing two people.  Soon, very soon we will all be together again.  We went for a walk and Linden showed me how well he could ride his tricycle, but I think at some point he realized I could carry him.  It was a long walk and wasn't easy carrying him, but again, I wasn't about to complain.  I stayed there until it was bed time and I got to put him to bed.  You don't realize how awesome these little things are until you go through a stretch where you are unable to do them.  I rocked with him in a rocking chair and he hung on so tight, I did too!  It was tough to go, but I knew we both made the most out of the day.  Next time I hope Sarah will be able to go with me.  

K

Walk Time

They see me rollin...

PT Cruiser!

Tubeless

Turns out Dr. Chaudry and Sarah did have a little deal.  I think Sarah was the first patient he saw this morning.  He walked in and asked how her eating went, she said good and showed him a list of the things that she ate.  He immediately started to pull the bandage off of her nose and was about to pull the tube out, Sarah had to stop him and tell him that the formula was still running through the tube.  He stopped the pump and quickly yanked the tube out.  He is a really great Dr;  Sarah and I both really like him.  Every time he looks at Sarah's eyes he says the same thing, "What big eyes you have."  He is very relaxed and has a way of calming me down every time he is with Sarah.  My favourite quote, he said to Sarah "Pull your pants down, I will have a look" then he looked at me and said "I'll keep my eyes closed."

The numbers.  Well, turns out that not a lot of emphasis needs to be placed on the white blood cell counts, or the neutrophils anymore.  Dr Chaudry explained to me this morning that they can stay around the level that they are at.  She is receiving a drug called cyclosporin which will keep these number at around that level, this drug is used to keep them at a consistent number.  This morning he told me that the number they are most concerned with right now is the platelets, which went up from 84 to 93.  I will find out more about this and hopefully be able to explain it a little better on a future blogpost.

Today we were out of the hospital in time for lunch, sent to the apartment on an evening pass.  Sarah tried to eat McDonalds, which for the first time didn't taste like anything.  She had a few bites and that was it.  We went to Safeway to buy a few more things for her to try.  For supper she tried Ichiban and toast.  She is eating, but has little desire to eat much.  She complains that everything tastes like nothing.  Despite this she is trying, and is able to eat a little bit.  It will be a process, and after a while she will be eating as much as she needs to.  For today we are happy the tube is out!

K

Day 27

Hello,

Today was a day.

Sarah tried and tried and did pretty good with eating today.  She managed to eat a bit this morning and did alright throughout the day.  In the evening is when she started to slow down.  Sarah said the tube in her throat hurt and made it so she couldn't swallow.  I have noticed an improvement since the tube went in.  She seems to have more energy, and seems to be feeling a little better.  The doctor and Sarah apparently made a deal that the tube would come out tomorrow.  I wasn't in the room when this deal went down so I cannot confirm this.  I guess we will see tomorrow.

The counts today looked alright.  The whites went down from 4.1 to 3.4, the neuts went down from 2.9 to 2.6 and then platelets went up from 74 to 89.  Her hemoglobin (for those who know what that is) is hovering around 90.  These numbers are good I think.  This is an interesting week because I think in the next 7 days things are really going to change for the better.  Sarah is about to round the corner, I can feel it!  

I took one picture today, but I don't think anyone needs to see a picture of grilled cheese and soup...  Tomorrow I hope to be able to add some pictures to the blog post.

K

Feed by Tube

Tube feeding is not fun, I can tell you that it sucks.  I doubt many people who read this know what Sarah is going through, but  Sarah does not like it.

The feeding started last night shortly after the blog was posted.  It is pretty uneventful but very important.  They started it by giving her 25ml an hour,  Cael drinks that in about two minutes.  The feeding stayed at 25ml an hour continuously for 24 hours.  Tonight they upped the flow rate to 55ml an hour, I am not sure how long it will stay at this level but I am assuming for another 24 hours.  The evening nurse today is a little more pushy and told Sarah that if she wants it out she has to try and eat.  Sarah can get it out soon if she is able to eat, and she is trying and will continue to do so.  Tonight she had a few bites of banana as well as a little milk, and a few spoonfuls of apple sauce.  I think she is still a little afraid to eat a bunch, but the fact that she ate a little bit and it stayed down is a good sign.  I think tomorrow she is going to try even harder.  The pain is in her throat, and I think the feeding tube is really irritating her.  Sarah knows the importance of the tube, but really wants it out, and wants to eat on her own.  I think she will do well, and she will be eating on her own before she knows it, but for now nutrition is going in by tube.

Her counts didn't go up again like we were hoping, but dips are normal.  Her whites went down a touch to 4.1, her neuts went up to 3.2 and her platelets went down to 74.  The change in the platelets is quite a drop, I tried to ask a little bit about it but the doctor and the nurses brushed it off as nothing.  They said if it continues to drop like this they will look into it.  I kind of gauge things on how they react, and if they brush questions off I can only assume its a normal change.  Tonight Sarah will stay in the hospital, but they said tomorrow night she might be able to sleep at home.  When she sleeps at the hospital they take vitals at 4:00 am and then draw blood.  They also have to check on her once an hour, so sleeping here isn't the best.  I hope tomorrow will go a little better, that Sarah will feel a little better and that she can eat.

K

ps, as long as the tube is in her nose, Sarah wont allow pictures...

No wi-fi For You

Well well well,  It was a nice couple nights off, but now I have to rack my brain and try to remember everything that happened the last few days.  It was a busy few days, but I will do my best.

The good news over the last few days is that her numbers have been doing well.  I will attempt to make another chart.

                                            Friday                Saturday         Sunday
White Blood Cells                 4.4                       4.3                4.6
Neutrophils                            3.1                       2.4                2.9
Platelets                                  48                        96                 99

So looking at this you can see things are pretty good.  The counts dipped a little on Saturday but went up today which is good.  The whites and neuts went up on their own without a growth factor shot.  It is exciting to see the numbers going up everyday, but there is one number that is going down daily but should be going up and that is her weight.  Sarah has tried and tried but is unable to eat, she did her best these last few days but wasn't able to do it.  We went to Safeway and bought and tried numerous things, we read the book on things to try but still couldn't find anything that would work.  On Friday the dietician suggested a feeding tube and Sarah and I talked about it and decided that she would give it another day or two.  We were at the apartment quite a bit on Friday and Saturday, Sarah had also spent the last two nights at the apartment.  We thought it might help her to eat if we tried different things and if the scenery was different.  She tried canned soups, baby food, cheezies, salt and vinegar chips, pasta, ichiban, home-made soups but none of them worked.  About the only thing she ate that stayed down was creamsicles and ice cream.  Over the past few days Sarah's energy was definitely affected by her lack of nutrition.  This morning, after she had asked the last two days, I brought her to the hospital on a wheelchair.  I think its understandable that she has no energy, I think it has been about 14 days since she really ate anything.  Last night her and I talked a little bit more about the feeding tube and decided to go ahead with it.  I think its hard for Sarah to get this tube in because she see's it as a step back.  With all of her effort, she wasn't able to get the nutrition needed, so this feeding tube is essential.  She will have this tube in for as long as needed.  The nice thing is she can help get it out sooner by eating as much as she can.  The tube was inserted this morning at ten, a short while later she was brought downstairs to get an x-ray done to ensure the tube was in the right place.  It is 7:30 now and we still haven't heard anything.  The have to have confirm it is in the right place before they begin the feeding, so she still hasn't had supper.  Sarah and our sweet little niece Leah will have some fun conversations about their feeding tube experiences.

I dont know who the IT guy is around here but I think he wanted to play a cruel joke on people over the weekend.  The internet was available and working fine all week, I go on the same network at the apartment and the hospital and then on Friday afternoon I couldn't connect to the wireless network.  Seems like they changed it so it will require a user name and password.  I hope to be able to get that resolved on Monday.  I thought I better write a blog tonight or else I am going to be so far behind, so in order to do that I had to steal a wire from the patient computers.  It is kind of nice because I am sitting in one of these massage chairs, If this blog is a little scattered and unclear it is because my whole body is being massaged and rattled.  We had a few visitors over the last few days which was nice, for both of us.    They help time go by a little faster, and help get our mind off of things for a short while at least.  Well Sarah is waiting in her room for me to finish this so I better get back to her.  Thanks for all the comments and more importantly the prayers.  Have a good Sunday night!

K

Dad and Margaret

At first glance you might think these two are doctors, but if you look close you'll notice the one on the left is holding a stethoscope but doesn't have the ear pieces in his ears.  

Its just Graeme and Adrian, they were up for a visit Friday and Saturday.

Internet isn't working

Hey everyone. The Internet isn't working in the apartment tonight. Sarah is on an overnight pass. I cant type a whole blog entry on my phone.

K

Snooki Pits

Hello all, this is Selina and Marie reporting live from Sarah's hospital room.  Kurt is feeling rather lazy and Sarah is lying in bed drinking some juice.  As a result, tonight Tuna and Sel are taking over.

Marie and I are a little nervous with taking on the responsibility of writing the blog; so much pressure!  The teacher (Marie) is making me type it out.  She said that she would edit it for sentence structure as well as my there and theirs.

When I first arrived, Sarah was lying in bed chillin' out.  Soon after that, Kurt, Sarah and I huddled into the bumble bee to pick up Tuna for a little visit.  It was quite a drive, but eventually we found her and decided that our evening adventure had to start with some Wendy's.  After enjoying our meal (if you call a frosty a meal), we chit chatted for a while about Entourage and other entertaining TV series.  We are anticipating the arrival of season 7!

Back to Sarah... she is feeling quite weak and wanted to take a wheel chair back to her hospital room.  But, Kurt  was persistent and simply helped her on to the elevator, through the doors, and into her room.  The nurse was quick to come to Sarah's side and she was just given nausea antiemetic pills.  Well, that's all Marie and I have to say!  Kurt will give you the numba's and other updates.

Selina and Marie  (Kurts sister, and future sister in law)



Hello,

Today Sarah's white blood cells went down a bit, they are at 5.6, and her neutrophils are at 5.0.  Her platelets went up a bit again to 42.  Any day now her throat should start feeling better too.

K

Selina, Sarah and Marie

Engraftment

Hello,

Sometimes its hard to see the good things.  When things go well, and when we get good news we sometimes continue to focus on the things that aren't going well.  I think its human nature, but Sarah and I have to remind ourselves to think about the good things and not sweat the small bad things.

Today we received really good news, keep in mind that yesterday she was given the GCSF growth factor so that was why things jumped so much, but it is good news all the same.  I will do my best at a chart

                                          Yesterday               Today

White blood cell                     1.2                      8.8

Neutrophil                              0.4                      7.5

Platelets                                  25                       39

It is great to see that the whites and neutrophils went up, and how they went up so much, but the most encouraging thing with those numbers is that the platelets went up.  The nurse this evening told me that the GCSF shot does not work on platelets, she went on to say that more often the platelets will go down after the growth shot.  The doctor this morning said that because the platelets went up on their own without a platelet infusion, there is some engraftment going on.  So now it will be a balancing act, they want the stem cells to grow, but not to fast.  They have to do it slowly so Sarah's body slowly adjusts to Elaine's cells.  She will receive a drug for up to a year that will suppress her immune system so as to slowly accept the new cells.  She is already seeing a little bit of graft versus host disease (GVHD) which for now is in the form of a slight rash on the back of her hand.  This is expected and is a good thing, a little bit of GVHD can be anti-leukemic.  They will keep an eye on this and will adjust her meds to slow things down if need be.  The doctor today talked to Sarah about her nutrition and how she needs to start getting calories in or they will have to look at a feeding tube.  This is the part Sarah is so stressed and worried about.  They told her that she needs to have about three to five high calorie drinks per day.  The past few days she has had half of one at the most.  So today Sarah was determined to get a little bit more nutrition in.  She did pretty good, she had some milk shake, some soup and also some boost.  It wasn't as much as the doctor wanted but it is a huge improvement from yesterday, which she has to realize and be happy about.  Tomorrow is another day, and I know with her determination she will do better!  

This morning I woke up to the sound of a baby, it has been a long time since that has woken me up.  My mom and I packed up all of Cael's stuff and walked over to the hospital, Sarah had just woken up.  We spent about an hour with Cael and his Oma before he was tired and had to nap.  Sitting and holding Cael was so nice for both of us, holding your baby and talking to your mom/in-law.  Does it get more normal than that?  These are the moments I enjoy while we are here, I know I have mentioned it before but those short times of normality are cherished.  Being with family is so awesome, Sarah has taught me to enjoy these occasions.  At around 1:30 Sarah was sent out on her afternoon pass, I made her some soup and we spent some time at the apartment being lazy.  Later in the afternoon we went for a short walk, it was a beautiful autumn day and to be outside even for a short while was nice.  Back at the hospital now, sleep well!

K

So sweet, both of them!

Cael and his Moms. 

Sarah and I on a short walk.  Self pics are hard, this is the best we could do!

Weening

Todays blog entry is going to be a short one, but I will make sure to include all of the important details!

This morning Sarah was up at 8:30, I arrived soon after that and noticed that the numbers weren't written on the calendar yet.  This could only mean one thing right?  You are correct, they went down again.  We are not discouraged just a little anxious.  Her whites are 1.2 and her neuts are 0.4.  Her platelets also went down from 30 to 25.  It was said to us again today that this isn't something to worry about, and that its normal.  Today she received a GCSF growth shot so tomorrow they should be up a little bit.  I think of this as sort of like teaching a kid to ride a two wheeler.  You have to help them out at first, but at some point you have to let go.  Sarah is feeling a little better than yesterday and today she was able to talk a little bit.  She is also trying to get off of the pain pump so tonight she has a morphine patch and then she will also receive her fentanyl as she needs it by pushing the button.

At about noon I headed over to Ymay Hair Studio (403-244-0608).  I went there to go help my Mom with Cael as she had her hair cut and coloured by my sister Rachelle.  It was so nice to see my baby again, he was as happy as he always is, and smiled at me like he smiles at everyone.  We headed over to the hospital to let Sarah see her baby.  We took the elevator up and I had to wait near the elevators with Cael while my mom got Sarah, a short while later she was finally holding her little boy.  We went back to the apartment and spent the afternoon chatting and watching Cael.  I don't want to brag but I think he might be the best baby around.  Sarah was able to stay at the apartment until 8:00.  She is now hooked up to her IV and will spend the night in the hospital.  Sarah said it was really nice to see and hold her baby but it is also hard for her to hold him and realize that she still has a long way to go.  It is still months away before she can hold him in his room, and lay him in his bed.  It was also very nice for both of us to see Mama Jo-Jo, to spend time with her.  She is going to spend the night in the apartment, so she will be here for awhile tomorrow.  As we were leaving to go back to the hospital she said "I don't need to read the blog tonight!" I think she will though.  As we go to bed tonight we can look forward to the numbers being higher tomorrow.  G'night

K

Sweet outfit Cael!

Cael's Laos homey

Smiles

Busulfan Tan

Hey everyone,
So, I can put an X through another day on the calendar.  I'm starting to go stir crazy in this room.  I want to get out of here but I have to give myself time to heal and time to feel better.  I am just being impatient.  Maybe one more week and then I can go on passes over night, we will see.  It is getting hard to keep saying "one day at a time",  but I know that that's what it it has to be.

Today I was more tired than usual and I don't really know why.  We did go for a walk on the main floor of the hospital and then outside for a bit.  The time spent in the hospital room went as usual, Kurt worked on the puzzle, and we watched some Entourage - well Kurt did, I took a cat nap.  I am trying to eat, but it is a slow process.  I am getting down as much liquids as I can, but everything tastes so bad.  The dietician and doctors say that is normal and will last 3 more weeks.  Blah.

Mama and Cael are coming tomorrow, Selina on Thursday, and Graeme and Marie on Friday. Tomorrow I hope to get a pass as soon as I can so I can finally see my little man.  It has been so long and my heart aches for him.  I'm praying I feel well and we we have a nice visit.  Anyway, not much else to write.  It was a quiet day, so tomorrow should be better.  Love you all and miss you like crazy.  Thanks for all the prayers and thoughts and comments, you have no idea how much they mean.  As much as you love the blog, we love your comments.

Sarah


Today was a pretty good day.  I am getting tired of saying it, but each day gets a little better.  Sarah did pretty good at trying to eat and drink more.  It was also nice to go for a walk with her and get out of the room for a bit.  We didn't get to go for an afternoon pass because she was hooked up to her IV all day.  Tomorrow she will hopefully be able to head to the apartment for some time with her baby.  Children under the age of 10 are not allowed on this unit, so it will be important for Sarah to get out of here tomorrow afternoon.  The numbers today were okay.  The whites are 1.4 and the neuts are 0.8.  The Dr still said this was good because it has been a few days with out the growth shot.  I think the most promising thing is that her platelets went up from 25 yesterday to 30 today.  Platelets is the part of your blood that clots when you start bleeding.  Normal platelet levels are between 150 and 400.  On this hospital unit they want you to be over 20.  When Sarah's dipped below 20 they would give her a platelet infusion.  The platelets are the most fragile part of your blood so if anything is wrong they are the first to go.  When Sarah was diagnosed her platelets were 11.  With them being so fragile it is very promising that they are going up on their own.  Sarah's sore throat is still bothering her quite a bit, she hasn't been able to talk too much yesterday and today.  She is also starting to get a little bit of what they call the busulfan tan, busulfan was the chemo that she received before the transplant.  The "tan" as they call it is sort of like a dark brown sun tan, but it is very uneven.  It is only on her hands and in her arm pits.  Sarah says its a little itchy but not too bad.  With this transplant it seems like when you almost get through one thing another starts.

K

Crushing Puzzles

It shwas another day.  Today was a pretty good day, a busy day, but a day that was once again a little better than yesterday.

This morning I started out the day the way all good days should start out, with a hot Tim Hortons double double, thanks Monika!  I ran over there while Brenda went up to Sarah's hospital room.  I brought Sarah up a tea and she was able to drink almost half of it.  We hung out a bit but it wasn't too long before all three of us were heads down over the puzzle.  We spent most of the morning working on this puzzle.  At about 2:00 in the afternoon the nurse came in and unhooked  Sarah.  She slowly gathered some things while Brenda and I were working on the puzzle, we were so close and Brenda, as she said, had to "crush this puzzle" before she went back home.  I think Sarah was about to leave without us but we did manage to crush it...  minus one piece.  We took the hike back to the apartment and had some lunch.  Brenda left us at about 2:30 and at around 3:00 my sister Rachelle and her husband Ewic arrived.  We Chatted for an hour or so but at that point Sarah had had enough.  You see when Sarah is at the hospital she is still hooked up to her continuous fentanyl pump (similar to morphine) but when she goes on a pass she is disconnected from it.  Today she took a morphine pill at around 3, but by 4:30 the pain was too strong and she wanted to be hooked up again.  So we walked back to her hospital room followed by Rachelle and Ewic.  When we got up to the hospital room Sarah was hooked up right away and started to feel a little better.  I decided to start a fresh new puzzle, I think Rachelle and Ewic were a little sceptical, but as soon as the pieces hit the table they were both going at it,  Ewic didn't even follow puzzle etiquette.  We worked at it a bit but they had to get going, I drove them back to there place.  When I got back to the hospital room I started working on this puzzle again, it didn't take long for Sarah to get up and help me with it.  I almost crushed this one too, but, I had a blog to write so I'll finish it tomorrow.  

Sarahs blood counts for the day was stable again.  Her white blood cells are 2.0 and her Neutrophils are 1.3.  The nurse and Dr both said that this was ok.  It is now two days without receiving the growth factor shot, so they said they were happy that they maintained.  I am pleased that they were able to stay the same as well, however I want to see them rising again.    This morning the nurse also told Sarah it was time to eat or else.  Sarah did a pretty good job today, she had a bit of yogurt, ice cream and some high calorie drinks.  Her stomach is not used to having much in it, so she has to train it again.  This means if she eats or drinks too much it comes back up.  She was good, and kept at it through out the day.  Tomorrow is another day and it will once again go a little better than today.  

K

Puzzlin

Vriend family tradition photo, that puzzle has been officially "crushed".  

Go Oilers!

All three of us are in Sarah's hospital room, watching hockey and Brenda just got hooked on puzzling.  

This morning didn't start out with the good news that we were hoping for.  I asked Sarah right away what the blood numbers were today, she told me that they had gone down a little bit.  Today her white blood cell counts were 2.0 and her neutrophils were 1.4.  This is a little drop and this is also normal, the doc told us it would go up but might dip a little bit here and there.  I think the biggest reason her counts dipped a bit was because yesterday she did not receive the GCSF (growth factor) shot.  This is the shot that they give to boost up her blood counts.  Despite her numbers going down a touch Sarah seemed to be feeling a little better today.  Her Sister Brenda arrived this morning while we were working on a puzzle, so she sat down and helped a little bit.  At about 2 Sarah was allowed to disconnect from your IV pole and make her way back to the apartment.  It was good to see Sarah back at the apartment, I think it was also nice for Sarah to be at "home" for a little while.  Sarah is definitely feeling a little better everyday but it is still baby steps.  Her throat is what is bothering her today, it is very painful.  I asked Sarah what the pain was like, and she said similar to a sore throat but way more painful that you could imagine.  I went to go get some groceries while Sarah and Brenda hung out in the penthouse.  When I got back we made a meal for Bren and I to eat, and then we walked back to the hospital.  Sarah was quickly hooked up to her pain meds and settled in to her hospital room.  It's 9:30 now, Sarah is looking real tired, I think she might be sleeping.  

K

Sarah and her sister

It hurts her mouth to smile.

Numbers

Another day and another visitor.  Today was Karens turn to spend some time in room 1784.  We had a good time chatting with each other as well as with Sarah when she felt up to saying a few words.  Karen arrived at 9 or so this morning and stayed until 6.  It is always nice for Sarah to have one of her sisters here, because if you know any of these Rietveld girls you know how much they love their sisters.  ...Tomorrow one of the other ones is coming.

I woke up bright and early this morning and walked into Sarahs room and the first thing she said to me was "did you see the numbers?"  So I had a look at the calendar and couldn't believe what had happened over night.  Her white blood cell count is up to 2.1 and her neutrophils are up to 1.6, this is awesome news.  Because they are at this number she wont have to get growth factor needles in her stomach anymore.  It is so exciting everyday to find out what the numbers will be.  With her white blood cell counts rising this will also speed up the healing in her mouth, throat and belly.  The pain in these areas does still bother her quite a bit, but I notice a substantial improvement everyday.  Sarah was awake a lot more today and was sitting and walking more than previous days, we even started a new puzzle today!  It is great to know that everyone is praying for us and I think we can daily see the power of prayer.  

K

Cheating on Strawberries

Hey everyone,

Things are going well.  I say well because I don't feel great, but I also don't feel horrible.  My mouth is sore, but tolerable, it's my throat right now.   It feels like I swallowed razor blades, very painful.  Also, my nose is very dry, and drips like a leaky  faucet, forcing me to wipe it and wipe it, which made my nose dry and its peeling.  On top of all that my feet are fatter that when I was preggers with Linden.  They feel brusied, they are so swollen because of all of the extra fluid I am getting.  This all makes me feel so very attractive, ha ha ha.  I'm not going to win a beauty pageant any time soon.   My counts went up again and things should be getting better in a couple of days, fingers crossed.  I need lots of prayer to get through these next days.  I love you all and I will write again soon.

Sarah

Today was a little better than yesterday, and that is about all we can ask for right?  Sarah's white blood count is up to 0.8 and her neutrophils are at 0.6.  Each decimal point they go up makes a big difference in how she will be able to combat a disease should one show up.  She is also still receiving antibiotics and anti viral meds to ward off any infections.  As her counts rise she will be able to handle these sorts of things on her own but it also means she doesn't have to be hooked up to her IV all day, which she is looking forward to.  She is also hooked up to the IV because she isn't able to swallow any pills due to her throat pain.  I would call it a sore throat but it is worse than any sore throat I am sure most of us could dream of.  Sarah is really looking forward to getting off of that IV pump, so she will do whatever she can to make that happen.  Today Sarah was able to drink a few sips of Boost, this is good news, but it will take a little work for her stomach to be able to handle nutrition again.  So far now she will drink a little bit and each day a little more.  On Monday we are going to pick up a bucket.  A bucket of KFC, one of the nurses told us that KFC seems to be the one thing that tastes right to transplant patients.  Sarah was awake quite a bit more today, she even watched a little bit of hockey with me.  Small steps each day, but I think she is progressing very well, she, on the other hand wants it to go faster.  

Rick also spent most of the day here today, it was nice for us to talk to him about what was going on and how we were feeling.  Rick also experienced Peters drive in for the first time today, it will be a day he won't soon forget.  

K

Watchin the game.

Going Up

It seems like the nurses around here are a little quicker to write the blood counts on the board when things are getting better.  Today they were written up on the calender before I even got here, Sarah said they were up there at 7:30.  The white blood cell count is up 0.2, and today they could see 0.4 neutrophils which is also good news.  

Sarahs mouth is still quite sore, and still doesn't look quite right, but it is better than yesterday.  Her spirits also seem to be up.  It seemed today like Sarah was ready to move on from this stage.  When she started talking about coming back to the apartment I knew that was a good sign.  I don't think that is going to happen in the next few days but Sarah has surprised me before.  Today was a little better than the last and that is all we can ask for!

K

This is what the calendar looks like.

This is Sarah on Skype with Cael

0.4

0.4

That my friends is a number, it is a number that is higher than 0.1, so that, my friends, is what we call "going up".

It is a little early to be really excited, but we have both been waiting a long time to see an increase.  0.4 is the number of her white blood cell count today.  The nurse informed me that within a week or two her white blood cell count should be in the normal range of between 4 and 11.  We are still waiting for her other blood numbers to increase, but this is where it starts.  I will let you know when other numbers rise.

This morning at about 9:30 Sarah was wheeled downstairs to have an ultrasound done on her liver, I walked down behind her and chatted with her while we waited.  It took a long time, and I was expecting  a ten minute wait.  Turns out there was a student doing the ultrasound so things take a lot longer that way.  When they were done Sarah was pretty tired and just wanted to get into her bed.  After a busy morning like that Sarah spent the afternoon sleeping or fighting to keep her eyes open.  We didn't hear anything back regarding the ultrasound, and when you hear nothing its good!  Despite the good news Sarah's mouth is still in quite a bit of pain and she is still getting a lot of narcotics for her pain.  It feels good knowing that for now each day is going to be a little better.  The journey continues...

K

The most exciting picture so far!  This is me actually writing the blog at that moment

It has arrived.

6

Today was more of the same.  6 laps today!  The waiting game continues, waiting for Sarah's mouth to heal so she can get off of the pain meds and stay awake.

K

4 Laps

Sarah Slept decent last night and that was the first time I have heard that in a while.

Today was another tough day, not that we weren't expecting that.  The last few days have been very uneventful as far as Sarah and I doing things go.  Sarah spends most of the day laying in bed and sleeping, today was much of the same.   The last few days Sarah has been getting blood to replenish her low platelets as well as her low hemoglobin, today was no different.  Today was the last day that she was to receive methotrexate, but due to bleeding and soreness in her mouth the doctors decided to skip this last dose of chemo, they told us that that would be the last of the chemo.  We hope that they are right with that.  So this afternoon they injected Sarah in the tummy with something they called a growth factor, it will help speed up the stem cell growth.   This still doesn't really change the timeline we are looking at though, they said she would get these for a couple or three days.  Tomorrow could be another rough day and then things should start to slowly improve.  I think we both cannot wait for the nurse to come in this room and write numbers that are on the upward trend, that will be a happy day.  Sarah did manage to get up and go for a few laps around the unit with me, it was nice to see her up and walking.  Sarah's mouth is still a mess, I would post pictures but I promise you that it is something you don't want to see.  Tomorrow is another day, and as things get better so will the blog posts.

K

Fentanyl

I arrived in Calgary at about 6:30 and after some unpacking I walked to Sarah's room.  She told me that it was nice to see her Aunt and cousins here, but she felt bad that she slept so much.  The Narcotic that she is on is called Fentanyl, it makes her really drowsy so she occasionally falls asleep in the middle of a conversation.  The pain is still very strong, but she is hanging in there.  The pain the she is experiencing is normal, she is exactly where the nurses and doctors predicted her to be.  A few more tough days like this and then things should slowly start to improve.  Sarah is taking this a day at a time and I think she is still doing a good job at staying positive.

I had a nice time hanging out with my family and my little boys, who are both doing very well.  It was an enjoyable time, but Sarah needs me here, so its back to work.

K

Dog Bowls

I am in Edmonton, Sarah is in her hospital room.

This afternoon I headed home to Edmonton for a night.  Sarah's Auntie Margaret is down in Calgary keeping her company.  I picked up Linden on my way to Edmonton and had a visit at my parents house and finally got to see our little baby.  He is so big and so strong now!  I will be heading back to Calgary tomorrow.  

Today was about the same as yesterday as far as how Sarah was feeling.  They did seem to get her pain meds dialled in a little better, so she didn't have to push the button as often.  Another day down, and another day closer to a pain free mouth.

K

Pushing Buttons

Today was a tough day, a day with lots of pain, lots of sleep, and lots of suction.

Another day dealing with mucositis.  Sarah spent most of the day in her hospital bed, she was up for a little while sitting on a chair and went for one short walk but other than that she was in her bed for most of the day.  The pain in her mouth and throat is severe but she seems to be managing it with the pain meds.  She is also using the suction a lot as it hurts to swallow.  She isn't drinking much, and has not ate a thing all day, which is common at this stage of the game.  She is using the club soda on a regular basis which seems to clear things up a little bit.  She has had the fever all day and because of this she shakes or shivers often, the fever, as I said last night, is most likely caused by the mucositis but they have been keeping a close eye on her all day.

Sarah has been sleepy all day due to the pain meds so I spent a lot time on the computer (thanks G&M) as Sarah  dozed in and out.  At one point she was playing a game on her phone and fell asleep.  The nurses have said that it's fine to sleep through these days, they are the worst, and the quicker they go the better.  Despite all of this I am still amazed with my wife, she is so focused and determined on getting past these days.  I pray she is able to keep this up.  Sarah sang this song a lot in Edmonton, at one point she said it was her theme song.


"Ain't nothin' gonna to break my stride
Nobody's gonna slow me down, oh-no
I got to keep on movin'
Ain't nothin' gonna break my stride
I'm running and I won't touch ground
Oh-no, I got to keep on movin'"



K

Oilers game tonight and I am in enemy territory...

Sarah busy on her phone. 

 

Look closely

This hospital room is better than a sports bar, the beer doesn't taste right though....

Cactus

One day closer!

Another rough day.  Sarah Slept in the hospital and slept well, this was probably due to the morphine that she was getting.  Before she went to sleep they hooked up the PCA pump so she could get her morphine on demand.  This morning she was pretty groggy but was determined to get up and not sleep all day.  We unplugged her IV and walked to the lounge, we sat down and started to work on a puzzle.  I think we were both surprised at how much we enjoyed it, just sitting there talking and working on a puzzle.  It was 12:30 before we knew it, so I went up to the apartment for a bite to eat and Sarah went to have a snooze in her bed.  I ran out and got Sarah a few different drinks to try, her throat is so sore and she won't eat anything so we are now trying to get calories from drinks.  She is also getting all of her meds through an IV as her throat is unable to handle pills.  The preferred drink of the day was gatorade, however she didn't drink too much.  The nurses have said that eating and exercise is very important to a quick recovery, I am trying to get her to eat or drink anything, but if I push it she is quick to tell me.  She has been doing well with getting up and around though, she didn't want to lie in bed all day which is a good thing.  After her snooze we went to work on our puzzle again.  We worked on it for a few hours and then it was time for another nap.  She slept for a couple of hours and then this evening we sat up and talked on skype to her sisters, which was nice for her and her sisters.  Sarah is watching survivor now and will probably doze off soon.

This evening Sarah had a fever of 38.8, anytime its over 38.5 they draw blood cultures.  They just took the blood and it will go down to the lab.  We were told that this is expected as the mucositis is setting in, but they do cultures regardless.  We hope and pray that there is no infection.  Time to turn in, good night.

K

Puzzle time, making Oma & Opa Rietveld proud!

Lounge

Today started out like most other days here.  I am running out of ways to start blog entries, so for today this is all you get...

We made the five minute walk over to the hospital and got Sarah hooked up for her meds once again.  She is getting most of the same stuff that she has received the last few days.  She rotates the days for the methotrexate with folinic acid another drug that stops the chemo.  They want the chemo to work for a bit and then they want it to stop it.  This is done to slow the chemo down, so it only works for a bit, and then it's stopped and then a few days later it starts again.  Today was a day where Sarah received methotrexate, which is fine because the effects of the chemo is spread out, so she is unable to feel any difference day to day.

Last night Sarah's mouth and throat was bugging her a bit, and when she woke up it was feeling worse.  She popped in a few codeine before we went to her hospital room.  This seemed to help a little bit, but after the codeine wore off she asked for some morphine.  Her pain was kept in check today as she let the nurses know when it started to hurt.  They set up a PCA (morphine on demand) pump, but she hasn't used it yet.  They also set up a saliva vacuum similar to what you see at the dentist, this is to suck out any phlegm that she is unable to get rid of on her own, she used it only a couple of times today.  Sarah did manage to get out to the apartment for a few hours before dinner, so she sat and read stem cell transplant stories while I did dishes.  Sarah is getting sick of staying in her hospital room so we spent a lot of time in the patient lounge today.  We are both very careful to sanitize before and after we hang out in this area.  Currently she is watching The Good Wife while I type this.  After that we will watch GLEE, because she is a gleek.

I try to think of things to share during the day to keep the blog interesting so this is another thing that I found interesting.  Every day, twice a day cleaners come into the room and clean the room from top to bottom.  My favourite guy is the floor guy, he is a middle aged Mexican guy who is always cheery.  You cant understand what he says but he is always smiling and whatever he is saying is funny, I know this because he laughs after he says it.  I am tempted to ask him for a cerveza.  Jose comes in first and then the ladies come in, they never say anything but they wipe down the walls, the windows, the tables, the pictures and the entire bathroom.  On Monday it was test day, this woman came into the room who I am guessing is the supervisor of the cleaning staff and started dabbing some stuff in different places throughout the room.  We asked her what the stuff was and she explained that she would come into the room after it was cleaned and use a light to show her if any of these spots were missed.  Shortly after she left two women came in and snooped around looking for these spots, one woman even went into the bathroom with a flashlight to try and find these spots.  Well that room was cleaned very very well that day.

Time to take a picture and post this entry.  Pray for Sarah in these next few days as the pain from the mouth sores could get really intense.
K

Sarah in the lounge area

Its Going

Another day, another 8:00 walk to hospital.  Today was another pretty good day, we were at the hospital on time to get blood drawn.  Sarah was hooked up to her IV and received her cocktail of meds and anti nauseants.  She didn't eat much today, but the good news is that she is able to eat ice cream and jello, and has been having some success with the meal supplement drinks.  The nausea is getting a little better as is the stomach trouble.  The new issue is her mouth and throat, it is getting quite "phlegmy" and really dry.  This makes it hard to eat anything that is solid or a little bit dry.  This is the start of the mucositis.  This is a copy and paste from wikipedia.

"Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. Mucositis can occur anywhere along the gastrointestinal (GI) tract."  (I don't know how to properly reference a website Aunt Corry)

Sarah and I are both trying to have a positive outlook when we know that this is around the bend.  It isn't here yet, but Sarah knows it is something that she can get through.  Today Sarah was talking about all of the different things that she has had to go through just to get here.  The first round of chemo at the UofA, the migraine headaches, the endless needles, the bone marrow biopsies, the heparin shots, the lumbar punctures, the diabetes and the labour and delivery.  The mucositis is soon going to be another thing to add to that list.  The positive attitude this woman has is amazing, I think it would wear off on you even if you tried  not to let it.  So that is Sarah's next battle, but she's already looking past it!

We were out of the hospital for an overnight pass again which is great.  We went for a drive this afternoon and stopped at Safeway for some applesauce and puddings.  After dinner Sarah and I went for another walk, there was too much climbing up the hill this time for Sarah though.  Next time we will stay on flatter ground.  Back up to the apartment to settle in for the evening.  This evening we also met a woman who is a month ahead of Sarah, we both took turns firing questions at her.  It was nice to see that she was doing well, but she also warned us about how hard it was to get the the point where she is.  

Thanks to everyone for your prayers, we haven't said thanks enough.  It means so much to know how many people are praying for Sarah.  That was the intention of this blog from the beginning by the way, to let people know how things were going and to give them things to pray for.  

Kurt

Pre walk photo.  Its getting darker earlier.

(Thats the building our apt is in)