PICC line GONE!



Mom continues to do well. She had her PICC line removed on Thursday and she did great! All of her clinic appointments have gone smoothly and she still has not had to have any infusions yet. She is still working on getting her appetite back though and she is hopeful that she can soon add dairy back to her diet...she misses cheese and ice cream!

Sorry....It's been awhile...

Mom is doing really well! She has only had to go in every other day for the last week to get checked out and she hasn't needed any infusions! Since she was told she could have bananas she hasn't needed any potassium or magnesium which is great!

She is doing so well they are considering pulling her PICC line at the end of this week so Mom won't have those long tubes hanging around anymore! She will still have her port in place for infusions if she were to need it.

Mom's diet list has increased in length but she still has 'bad' days where she really relies on her Zofran (anti-nausea medication). But, overall the number of good days far outwiegh the number of bad days.....plus Dad is getting quite handy in the kitchen...haha.

Day +19

Home, Home at Last!

Mom is once again home...

She is tolerating the BRAT diet well and attempting to add to her 'list of foods' that she can eat on a daily basis...with the exception of dairy...NO dairy for awhile, right Mom?

Her 'list' so far includes:

toast

broth

chicken noodle soup

jello

popsicles

hot tea

crackers

Items that have failed:

mashed potatos

                                          (just ask dad about that one...haha)

crystal light peach flavored tea

So...we just keep trying.

She will now continue to head into the BMT (Bone Marrow Transplant) unit everyday to receive any infusions she made need...i.e. Magnesium, Calcium etc.

Day +17

Pretty sad isn't ladies?....

Anyway...Mom is doing a lot better today. She is now tolerating toast, chicken noodle soup, crackers, broth and the like.

The plan is to keep doing the BRAT diet, decrease her her IV fluid intake and see how she does.

If (for some reason) she declines overnight then they have planned to

 'scope' her and see if anything else is going on 'down there'...

Other than that, she sounds better, way more perky and

she even beat me twice at cards today.

I am leaving tomorrow to go back home and hopefully Mom will be home by the weekend!

Day +16

The C-diff lab results are in and it is

NEGATIVE!

Whew...we dodged that bullet. Mom was a bit upset at first because she liked the 'idea' of having a diagnosis and a medication that could make her better.....until I told her that once you contract C-diff you are more likely to get it again...and again....then she changed her mind a bit.

We feel like we narrowed this whole incident down to milk...

even though Mom was taking her Lactaid pills whenever she ate dairy products.

 I think we will just stay away from dairy for awhile....

The plan?...Mom will start the BRAT diet tomorrow (minus the banana part)...

so toast, crackers, applesauce, hot tea...that sort of stuff.

Plus, she hasn't had any anti-nausea medications all day which is an improvement...

I doubt she comes home tomorrow but you never know...maybe if she tolerates her breakfast and lunch we could be surprised with a discharge...but more likely it will be Tuesday.

48 hours...(Day +15)

So....we were home for a total of 48 hours...and then....

C-diff hit....

Mom went in today for her daily infusions of needed medications...sometimes it is Potassium, sometimes Calcium...but today was a low down, lousy, no good day....

Mom couldn't keep anything down and she was spending more one-on-one time

with the ladies room than me...even after three doses of anti-nausea meds.

I discussed things with the RN, the doctor was consulted and it was decided that Mom most likely has C-diff which requires medications...which Mom probably can not tolerate orally at this point,

 so they must go in her IV.

So here we are again....

Mom was re-admitted for some IV medications and fluids to keep her hydrated during this time.

Hopefully she will be able to come reallllllly soon...

Her new phone number is

804-649-5404

....I would give her some rest tonight, she is really tired and honestly, a little mad at the whole situation.

She did not want to be back here AT ALL!

**you may look up C-diff for youself if you wish...but be prepared, it is not for the weak stomached individual...

Day + 13

As long as everything stays status quo Mom is

Headin' Home Today!

She will still have to go into MCV everyday for infusions/ replacement therapy but at least she gets to go home and sleep in her own bed...

Thanks for all of the prayers and well wishes...

Day +11

Mom's WBC was up to 2.9 overnight!

The doctors have said she may go home when her WBC is between 5 and 10 as long as ...

1. She has no fevers.

2. She is free of infection and

3. She is taking in 1000 calories/day and drinking 1L of fluid

Day +10

Mom is doing really well today. Her 'Nader' day was Saturday when her WBCs hit a low of .1 (normal for the average person is 4,300 to 10,800) ...so .1 is as close to nothing as you will ever see. Today her WBC are back up to .8. This is her new stem cell bone marrow taking hold in her body.

The doctor came by today and told Mom that he believed she had just spent her last weekend in the hospital...which means Mom should be home by Friday!

Mom is doing well with eating, most of the nausea etc. has dialed down a bit. She is tolerating clears well and some cereals. She is taking it very slow to let her digestive track heal better....but she learned this morning she does not like 'Cream of Wheat'...so that is on her 'NO' list of foods...haha.

Cute Couple

New Phone Number

804-649-5376

Day +8

I am back in Richmond this weekend to be with Mom, she is doing great. Her WBC are at .1 so we believe she has hit her 'Nader' mark.

Her room had to be changed this morning due to a stopped up shower...so her new room # is 10055.

Her phone number has also changed and as soon as I have that I will post it here for all of you!

I am also hoping to post some more pictures today!

Day +5

No news is good news....

and that is just what we have to report....

Mom is up and eating...at this point the doctors have said if she keeps doing this well she

may be home by the 15th!

Day +4

I look like Demi Moore!

The shaved head...that is...

That's right, Mom is sporting the shaved head look as of about 10am this morning. I couldn't be there but I was able to listen to the event via speaker phone...not a tear from Mom!

So proud of her!

Day +3

Mom ate SOUP!

Yeah!...I mean..well, I had to drain off all the broth and she ate noodles but hey, I will take it!

Then I finally found a game that I could beat Mom in...

Chinese Checkers for 2!

And did I mention Mom has a new found admiration for Charmin?

...I had to bring in some for her, she said the hospital TP was just awful!

I took a look at some of Mom's labs when I got to the hospital and it appears she dropped 200 'points' in her white blood cell (WBC) count...that is huge! Plus it looked like this happened on Friday into Saturday so that could have also made her feel more tired than usual...add that to the chemo 'yuckies' and the sleepy anti-nausea medications and that pretty much sums up why mom was a zombie on Friday and Saturday.

Her WBC still have a ways to go in the 'dropping' phase...when she hits 0.0# she will be at her 'Nader'...from then on when her WBCs go back up we know that is the new batch of stem cells taking root.

Her platlets still have a ways to drop as well...

I am thinking Wednesday or Thursday may be her 'sleepy' days...

***

Then it happened...Mrs. Carolyn G. said that Morgan had taken a long afternoon nap and complained of a headache...OH NO!

Sure enough by the time I picked her up she had a fever...so I scooped her up, went back to Nana and Grandaddy's...packed up and we were on the road. With Mom's WBC being non-existent in the next two days I couldn't stay and be around her and I couldn't chance Grandaddy getting infected either...

Let's just say the car ride home was...interesting...I can tell you that the Caroline County Fair Grounds have nice facilities (and I have not been to the fair!)

Day +3...this marks 3 days past stem cell transplant. I will mark her days like this from now on. Hopefully by Day +18 she can go home!

Changing it up...

I came back into town today and went to the hospital to see mom...

It seemed like Friday and Saturday she was 'down' and really tired, almost 'out of it'. Being a nurse, (mind you I know little about oncology) I do know a little bit about some of the medications she is receiving and some can really make you feel like a zombie. She is pretty nauseated already and we are not even into the 'harsh' side effect time from the chemo yet...which means she is not eating....at all....popsicles, is that a food group?...add that to the side effects of the anti-nausea medications and mom was completely out of it, couldn't even keep her eyes open during a conversation...

I talked with Mom's nurse and Mom and we were able to get the doctors to change up her nausea medications a bit so hopefully she won't be so 'out of it' all of the time.

Her hemoglobin was slightly low last night so she did get some blood...

I was able to get her to play some cards with me (yes....she still beat me...),

go for a walk and eat half an 'Italian Ice'...

Then she got brave in the hall and let me take a picture of her...

I just called her and she is way more alert...just ate some carrots and green beans!

***

And Nana...don't worry about us...we are doing just fine at your house!



Stem cells & Jolly Ranchers

So..today is the day Mom will get her stem cells back. The doctors have recommended that Mom suck on Jolly Ranchers to help with the 'metallic' taste in her mouth from all the preservatives they use to keep the stem cells 'fresh'.

I called Mom this morning and she had a rough night. She got sick a few times and then after breakfast again. She is pretty queasy but the nurses are loading her up on some good anti-nausea meds so she said she felt a little better last time I talked with her.

Dad is heading in for the afternoon to spend some time.

Hangin' Out

So...today was Mom's 'day of rest'.

The day in between chemo and the re-insertion of her own stem cells.

She was a little tired, she said that between the vital signs and the IV beeping she was up all night.

 The nurse said she actually found Mom at one point asleep with the pillow on top of her face to block the IV light and the noise!

Note to self: bring mom ear plugs...haha.

We tried to get Mom up today and get her active since she was so tired...

Lots of walks around the unit and staring out of windows...

Here Dad is pointing out the race track nearby and....the jail...nice.

Tomorrow is the BIG DAY.

Tomorrow starting at about 1pm she will get her stem cells re-introduced back to her.

The doctors say she shouldn't feel too bad, mostly just a bad taste in her mouth from the preservative they use to keep the stem cells 'fresh'.

So at 1pm...start PRAYING!

Chemo Infusion

The Chemo is IN!

The entire infusion only took 30 minutes and Mom is doing fine so far...

Pre-medicated with some anti-nausea and steroids...

The chemo is in that dark bag....that's it, that's all there is.

One little bag is gonna do all the work to clear out Mom's system so the stem cells have a fresh home.

Mom kept busy with popsicles and ice during the infusion. The thought is that if you have a cold mouth and the blood vessels are constricted in the mouth, there is less blood flow...then less chemo exposure to the mouth which can result in fewer mouth sores later.

Plus the woman beat me TWICE at Rummy today...

All Checked In...

We got to the MCV/ Massey Cancer Center bright  and early this morning for Mom to get admitted.

Her nurse (Richard, who is awesome!) got all of Mom's bloodwork done and got her PICC line accessed. Mom was even  kind enough (and brave) to let a new graduate RN access her port. It was this nurse's first time and both Mom and the RN did great. All lines have been accessed and are working.

Mom's will get her one dose chemo at 4:30pm this afternoon. It takes a half hour to infuse. Then she has to shower at 10:30pm tonight and early in the morning as the chemo leaches out of your pores and the staff doesn't want her to sit around in 'chemo skin'. She has linen changes at that time as well. She should feel good for the next couple of days.

The RN said she shouldn't feel any side effects until day 4 or 5 after the chemo goes in.

Mom and Dad....aren't they too cute?

Wanna contact Mom?

Here is Mom's address while in the hospital.

Sheila Wells
C/O MCV/VCU Hospital
Bone Marrow Transplant Program
1300 E. Marshall Street
North Hospital, 10th Floor
Rm 63
P. O. Box 980157
Richmond, VA  23298-0157

Moms is in room 63.

Her room phone # is: 649- 5471

Her cell phone # is: 839- 7654

Her email address in case you don't have  it is: ws_wells@hotmail.com

Postponed...

Mom's admit date has been postponed until  March 2, 2011. Apparently there are still some people that need to be discharged before she can be admitted...

So, we are waiting for her phone call today so we know whether or not she is actually going in on March 2. With this new schedule, Mom will be admitted on March 2 and given high dose chemo that day. Thursday will be her 'day of rest' and then on Friday they will re-insert her stem cells.

The nurses have told us Mom will probably not experience any side effects from the chemo for 5-7 days. However, eventhough that is the case as of Thursday she will have no immune system for some time.

Will keep you updated!

UPDATE: March 2 is a go...

Enough stem cells!

We have enough stem cells. Mom ended up needing to go in an extra visit each night to get booster injections to help more stem cells come out into the bloodstream so they could be collected...

Tuesday: 2.5 million

Wednesday: 2.5 million

Thursday: 3.5 million

Friday: 4 million

Just over 12 million stem cells collected! That is more than enough for two stemcell transplants. This is great news! Half will be frozen for future transplants if needed within the next 10 years.

March 1 is still the plan...just waiting for the confirmation phone call from her coordinator for admit time.



Updated Email....

Tomorrow is the beginning of the whole process. Tomorrow morning (2/18) mom will be going into MCV to have a double lumen PICC line placed as well as a 'port-a-cath' placed under her skin around her subclavian (think collar bone region). She will then go in for the next four days and receive subcutaneous injections (think insulin needle) into her abdomen to help her bone marrow 'make more stem cells'. We are told mom may have flu like achiness during this part. Then after those four days she will go in and get her stem cells taken from her blood. This process takes about 4-6 hours for as many days as it takes to get enough stem cells so that the doctors have enough to do the transplant with (and hopefully enough to save for a second in the future if needed).

Then March 1 is the BIG DAY!...mom will go into the hospital at MCV and receive high dose chemo for one day. Then she gets a day of rest and then they transplant her own stem cells back to her.

The doctors and nurses have painted a pretty nasty picture of the days to come with the side effects of the chemo and other medications...however we are told that they paint the worst picture possible so we are hopeful that mom will be able to tolerate the side effects a bit better than predicted. She is in EXCELLENT health, her blood and urine levels at present are what you and I would have if tested...she is in complete remission and that in itself is a miracle. Her oncologist stated that she has only had 2 people (including mom) that have gotten to complete remission using Revlimid. We are taking the cleanest of the clean stem cells here...wiping out what is left in mom's body (the hiding cancer cells) with chemo and then putting her complete remission stem cells back in...ideally she will be in the complete remission following the whole ordeal with tests to confirm this 60 days post transplant.

Mom will be in the hospital anywhere from 18-21 days. Mom is requesting no visitors at this time...she is not sure how she will be feeling, looking etc. While on neutropenic precautions she can have no fresh flowers or fruit delivered to her (this goes for the next 3 months). Everything has to be brand new when she goes into the hospital from her slippers to her make-up.

After she is home, mom and dad will have to go to MCV everyday for a while to get labs drawn and get mom the supplements she may need to keep her immune system up...be it magnesium infusions or antibiotics if her white blood cells count were to increase for any reason...these days can last 2 hours or all day at the hospital depending on what she needs. After the first week or so we are told the 'everyday' trips will slack off a bit or every other day or maybe every 3 days the further she gets out.

Mom's immune system will be nothing...her diet will be limited during the following 3 months post transplant. No fresh fruit, veggies, no restaurant food, no lunch meat or food prepared outside of her home. Her sheets have to be washed frequently, new towels each day....yeah, I know what you are thinking...how will Dad survive?...haha...

I will come down as I can to cook, clean and help with laundry. Once mom is at home the grandkids can't be at her house for awhile...so both kids will be at home with Pete. Hopefully, by that time mom will be feeling better however she will still be restricted to what she can do at home....mom can not do any 'dirty things' like wash laundry, wash dirty dishes etc.

That is all for now...I think that covers most everything. Please feel free to email me with questions...mom is requesting we not mention anything on facebook but please feel free to call her at the hospital, email her and I will be sending  out her address while in the hospital as well. I will also be updating this blog frequently as well so please check here for fresh news.

Brief History

This is a very minimal information timeline. It is from my memory so everything isn't perfect. I haven't listed any lab numbers, for example because it would take longer for me to explain them than to know this...high numbers= bad; low numbers = good (what you or I would have).




June 2009: Mom notices some rib pain and sternal discomfort to the point she is needing pain medication. Since she has just had reconstructive surgery in that region of her body we all attributed the pain to post surgical pain. At this time Mom also has an incident with swallowing her osteoporosis medication and decides with doctor's approval to discontinue using it.

September 2009: Mom is finally able to get one of her doctor's to preform an x-ray of her chest region. We are told it is negative. Then by chance another radiologist takes a look at Mom's xray and he says the 'spots' on the bones of her upper arms are indicative of Multiple Myeloma (MM). At this point it is recommended that Mom see an oncologist to rule this out.
Towards the end of September it is confirmed...Multiple Myeloma!

(what is that?...see link on the right side of blog)...

October 2009: Mom is started on Revlimid which is a medication that makes the environment poor so that the cancer cells no longer want to reproduce. She is also started on steroids at this time. Mom also has a bone marrow aspiration. At this point Mom's lab numbers are not within normal range for the average person. They are higher than should be (but not the highest the doctor's have ever see before...).
Presently, the doctors are in the process of switching out staging scales for MM. So, according to the old staging system Mom is a Stage III but according to the new staging system Mom is a Stage I. This means we caught it early and we are ecstatic!

From November 2009 till November 2010: Mom's number continue to drop to the point where she is in complete remission. It is recommended that Mom go ahead with a Stem cell Transplant. The idea being that since her blood is as 'cancer free' as it can be we remove her stem cells and store them.

March 2011: Mom has her double lumen PICC line placed and her perma-port placed. Stem cells are removed so that they may re-infuse them after Mom receives chemo to kill all the 'hiding' cancer cells in Mom's body. This way her system will be as cancer free as possible to put the stem cells back in. Yes, there will still be cancer cells in her stem cells, studies show that cleaning the stem cells is too risky because you can kill the good stem cells as well. This is not a cure but hopefully she will stay in a complete remission for a few years.
When her numbers begin to rise again she can possibly have another stem cell transplant or re-start her medications (Revlimid).


Some questions? you can email them here and I can post the answers...if I have them!