Halleluiah

Halleluiah???? It is wonderful and terrible but .......... Heather is finally free of the pain and aggravation.

We, as the family of Heather, want to thank each and every one of you that have prayed and/or thought about Heather and her family during the last three months. Theses days, as you can imagine, have been the toughest of our lives but also the best of our lives.

As Heather's brother, I saw from the first bout of cancer, how devastating the diagnosis and treatment can be. I also saw how it can make one very close family even closer. What could have possibly happened this time? It made two families closer. Imagine that, the worst possible news that anyone could get and yet ..... there is good news also.

Following Jim's last message , the Rituxamab that we all hoped would work, didn't. Her lungs, kidneys and blood had just taken too much abuse from the previous treatments. The one thing that we can be thankul for is that the doctors were able to learn a little bit more about this extremely rare condition that fell on her. Heather past away in her sleep on Sunday, June 1, peacefully.

As the family of Heather, through many tears but also much laughter, we want to thank all of you for your concerns, well wishes and prayers. This will be the final entry to the amazing account of Heather's courageous battle and can only hope that each and every one of you will remember her as we will, STRONG.

Ryan Newell

Services will be held on June 6,2008 at 2pm at the First United Methodist Church in Waynesville,NC.

Rituximab

Another crazy heart-wrenching week. Heather continues to struggle with her breathing and kidneys. She sleeps alot and I try to make sure she is comfortable. Drugs are a good thing though I know Heather would prefer not to use them. She needs to rest and if it means with some help, it means with some help. Talking to the nurses, she won't get addicted. Once she is out of pain and discomfort, she won't want the drugs. She is very worried about it.
The source of her troubless seems to be TTP, a blood disorder where the b-cells of her blood destroys the red blood cells and platelets. This is causing kidney failure and the lungs to struggle to recover. It is a very difficult issue to treat as it is rare in and of itself and even more rare for transplant patients. Therefore, limited research has been done and no known truly effective treatment. We are trying to use a immune-suppressent drug called Rituximab - a chemo used frequently for leukemia patients. It has been used 5 times before on transplant patients and has shown some success. Really not any other options. Rituximab attacks the B-cells and the hope is it will allow her body to reset itself. Then we can attack the kidney issues and try to heal her lungs. We continue to move forward on starting dialysis again. Prayers are always helpful.
I also think God talked to me today as I have been really struggling to hold onto hope and positive thoughts. Being part German, I can get stingy and don't like to waste money so I asked to have the oxygen equipment taking out of the apartment as it is costly to have. Especially knowing it will still be a while for Heather to get out of the hospital. The company called me yesterday to schedule a pick-up but I missed the call. Tried this morning and they said that they has no order to remove?! I believe God is telling me to hold on a minute - she is going to need it whe nshe gets back. I do believe this so keep the prayers rolling. Heather is going to prove everyone wrong again and beat the odds!!!

Jim

Pin cushion

Hello again,

Heather has had a couple of good days this week. Sister Kim and mom brought Kylie back and spend time with Heather. What a boost!!!! You can see Heather light up when they come into her room. Of course, seeing our daughter was a hugh bost for me. I fight with the fact that I can't keep me family together. While I know the circumstances are out of my control, it still hurts and is frustrating.
Today was very busy and probably the most hectic for Heather. I could tell right away that she was tired when we arrived in her rom this morning. After rounds by docs, we were told that some other docs would be seeing her. Little did we realize to what extent. It started with the replacement of her trach tube with a smaller more comfortable tube. Not sure how any tube in your throat can be comfortable but.... x-ray shows right lung clearing up (yeah!!) but fluid near left lung. Kidney functions are tanking according to the reports (eyes still jauntice so it must be true) so they have kidney specialists here. Also, have strange blotches on her left arm so the sent in dermatologist to look. Look must be doctor talk to poke, prod and cut. While the ultrasounds are comfortable, let's talk about all the holes we had put in her. Did a skin biopsy on her arm to see what the blotches are. Basicly a cookie cutter 3 mm wide twisted into her arm and then pull out the skin. Sucture close. Need unbiased blood draw for kidneys - hey no one has messes with her feet, let's go there. Two draws- one each on top of each foot. Let's look at her lung, hmm... ultrasound shows fluid, let's do a needle biosy to draw some out to see if it is infection or something else. Another poke! While we are here, let's draw out the fluid. Ended up with almost a full liter of fluid pulled out of her left lung. Don't know how she does it. She is the most remark-able woman I have ever met. I hope she feels all the love I have for her. Gave her pain meds to keep her comfortable and let her sleep. Time to go. Keep the prayers coming. Hopefully, we have turned the corner. God bless you.

Jim

Crazy May

Hello everyone,

You will find this posting not to be in the same fashion as all the rest - mainly because it's not Heather writing to you. It's her husband Jim. Sorry this has been long overdue but as most of you know, Heather has been in the hospital.
First and foremost, THANK YOU for all of the love, support and prayers. we couldn't do it without you. The past two to three weeks have been an extreme ride for all of us - worse than the BORG...While not wanting to get into too many details, I wanted to bring everyone up to date. What started as a little discomfort breathing turned into a fight for her life. We spent a week at 9200, isolation wing at Duke for BMT patients. Heather was great but wasn't horrible either. That changed abruptly on May 6 - she had a "white out" which basicly means she couldn't catch her breath and they had to intibate her -put a tube down her throat. Come to find out that her lungs were bleeding as a side effect from the chemo and she was drowning in her own fluids. They were able to get her stabilized and drain most of it. As we all know, Heather does nothing the easy way!! Up and down from then on. What helps the lungs hurts the kidneys. What helps the liver hurts the lungs. A balancing act ensued. Took the tube out three times (once by Heather that wasn't planned by the docs) but unable to keep her lungs working right. Decision was made to give her a trach tube to help wean her lungs off ventilator. She got it this past Friday. She is definitely more comfortable and moving ever so slightly forward. Today has been the best so far. After the 2-4:30 pm quiet time where they kick all visitors out of ICU, I returned to find Heather alert and trying to communicate. Lip reading was not on my college cirriculum so it has been difficult but possible. Proof being I was able to get her password to the blog with no words said. She seems to have taking a turn to the good and the spark of Heather shined today. Please keep her in your prayers.

PS Soon, I hope to be her typist and have her dictate her own message to everyone.

Back to the Hospital

I'm getting ready to head back to the hospital in just a few minutes. For some reason my red blood cells and platelets have begun to breakdown...my understanding is that it's called TTT. I have to go into the hospital and do some sort of plasma treatment. I don't have much info at this point about it. So I won't be online for the next several days but wanted to throw a quick update.

Visit from Opa!!!

First time Opa Reid has seen his granddaughter! He drove 11 hours to visit!

Confusion

I have a friend Kevin who is also battling Hodgkin's lymphoma. He said just recently that he's just tired of the chemo and the nausea and the fatigue. I feel the exact same way. I'm just over the body aches the most...it's all so emotionally and physically exhausting. With me, it's not as if the body aches themselves are completely miserable, but you can't imagine have much it breaks down the spirit and the mind. Jim is constantly asking why I postpone or even refuse to take my pain meds when they do ease both the pain and I guess it's pretty much depression that comes with the pain...but I really haven't been able to explain or understand myself why. The pain meds are narcotics because I'm not allowed Tylenol or anything like that that will mask a fever. There's just something about taking the narcotics on a regular basis that bugs me. I'm taking low dosages and not abusing it so it's not like I'm worried that I'll become addicted. There's a lot about this battle that I don't necessarily understand my own mind processes and thoughts.

Thanks Aunt Dani!

Thank you Aunt Dani for helping out over this weekend!

Blood Type

So I officially found out today that my blood type changed (as it should with the transplant.) It probably happened a while back, but I finally remembered to ask today for the nurse to look it up for me. I was born O positive but my donor is A positive so when his stem cells took over it changed my blood type to his. So I'm officially A positive now. Pretty interesting this transplant stuff is!

Trip to Duke Gardens

Unfortunately I wasn't able to go, but here are some great pictures from Jim, Tina, Oma, and Kylie's visit to the beautiful Duke Gardens.

No Visable Hodgkins!

The doctor let us know that there are no signs of Hodgkin's on the chest xrays or CTs that we've taken checking up on the other lung stuff! Along with the fact that I'm over 98% engrafted we've been getting some great news in the midst of some tough times. If we can get my lungs to play nice from now on maybe we can just keep moving forward. The doctor called me the most resilient patient he's had...and I have no plan on letting up!

My Baby Is Growing Up

The first picture is from around Feb 15, and the second picture is from today April 18.

It was surprising and exciting to see how much my little Kylie grew in the week that I was in the hospital. Keep in mind, I'm not allowed to see her when I'm in the hospital! She'd such a different little munchkin than she was a month ago. She's settled down, she's able to be happy just looking around the room and at her colorful toys. Oma Reid has been amazing with her, always talking and playing with her! Her little tummy has settled down with time and her medicine so she's a much happier little camper. They grow up so fast don't they!

Good Day Finally

Today was a good day again after a long past week. Didn't sleep soundlessly, but slept far better than in the hospital. The at-home infusions are pretty easy, but at the same time it makes waiting on the nurses at clinic tougher because I know that I can do what I am waiting on them for! ;) I feel much better than I have in a long week.
I haven't had the opportunity to say that my sister is here visiting this week which is wonderful!!! Its the first time that she's gotten to see Kylie and I've missed her so much! Unfortunately she has to leave tommorrow, and unfortunately most of the time was spent in the hospital, but it has been do great to spend time with her!

Back to the Hospital

The blog has been quiet because I just spent the past week in the hospital. This time was a little bit scary. A week ago Sunday I started getting short of breath on exertion, nothing horrible, but noticable. By Tuesday I was having a hard time walking a snell's pace into clinic in the morning. Plus the chest xray from that day looked ugly...my right lung (yes, my safety blanket lung) had opaque areas that the doctors didn't know whether it was infection or inflamation again. They admitted me by Tuesday afternoon. By Wednesday I couldn't make it to the bathroom without being on oxygen. This episode hit so quickly and so hard that it was simply scary. To not be able to breath...

The next several days were full of antibiotics, antifungals, antivirals, and steriods. Thursday was my 3rd broncoscopy which went far easier than expected since my lungs were already so agitated. It became a huge dread to have to go to the bathroom because it wore me out so much.

Great news came on Friday, Jim's birthday. We found out that over 98% of my tested blood was that of my donor's DNA which means the engraftment was succcessful! That was a HUGE pick me up during a crappy week.

The first 5 days were tollerable but then cabin fever struck in since I couldn't really even leave my bed. Finally on Monday I saw a hint of improvement on my breathing. By Tuesday I was able to make a lap around the hallway without my oxygen...still quick to get out of breath but much improved. Finally today I was released to come back to the apartment. I have quite the hospital supply store here because I had to have oxygen set up just in case I need it, plus I have to do at-home IV infusions because some of my meds are given every 8 hrs. Who needs nurses and clinics?!?! After this I can take care of it! ;)

So far all of the blood cultures have come back negative (no infection). So the belief is that it is inflammation and that the steriods finally had a chance to kick in and given some relief...but the truth of the matter is that no one really knows for sure (but at least the doctors own up to it!!!)

Prednisone

Today started off rocky just because...mornings are full of aches and pains and clinic was at 8:30. I'm weaning off of the prednisone steriods that I've been on since last October. It's not an easy thing for anyone to do who has been on the steroids longterm. There can be lots of nasty side effects because your body has stopped producing cortisol because it was provided by the drug. The weaning is very slow. I was taking 40mg and can only decrease by 5mg each week, and the closer I get to zero, I'll have to slow down to decreasing 2.5mg per week. So although I'm looking forward to getting rid of the steriods, it also makes the road a little rougher. Weaning can result in joint pain, fatigue, nausea, and in my case tightness of breathing again until my body finally adjusts to not having the steroids.

Full House

I forgot to mention that my sister-in-law Tina arrived from Jacksonville, FL Saturday evening to help out as well. With both Oma Reid and Tina here this week, Jim will be sneaking away to get back into some of his stores and back into the groove of work. We are so blessed to have so many friends and family to help us...as my mom said, it truly is taking the village to help raise one child.

A Good Day

Saturday was a great day. I felt as good as I have in quite a while, clinic was short, and we took a trip to Babies R Us to get formula and get out from behind the confines of the apartment. It was really nice to honestly be able to say that it was a good day when I when to sleep that night.

Oma to the Rescue!

Oma Reid (Jim's mom) arrived from Florida for the month today. This is the first time that she has gotten to see Kylie which is exciting!
I also got to stop 2 of the IV drips that I had been having to get daily. Unfortunately, the one remaining is 2hrs long. Oh well, beggers can't be choosers. It should still shorten my time a clinic each day.
By the way...Oma Reid was born and raised in Germany and Oma is German for grandmother.

Little Sleep

Dang that breathing treatment! It continued to haunt me last night too! I sounded like a harmonica when I was breathing and went through several hard bouts of coughing. My inhalers helped a little bit, but it definitely wasn't a great night of sleep!

Long Day At Clinic

I thought today was never going to end and kept waiting for someone to say April Fools! I had to be a clinic at 8:45am today. I got my labs drawn then had to go for the weekly Tuesday chest xray. When I got back, I found out that I had 2 new things to do today: a breathing treatment that prevents pneumonia and a different IV drip to boost my IgG - "IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections" - because I guess mine were running low.
So after the xray, we started the 2 typical daily 30 min antibiotic drips, but then I got whisked away to another room to do this breathing treatment. Can you say awful!?!?!?! Imagine sucking on some nasty tasting pills for 25 min. It was so intense and gross that I lost the cranberry juice that I had just finished drinking.
After that horrible ordeal, I went back to my standard room and had to finish my daily 2 hr drip then the IgG 2.5 hr drip. Unfortunately, I couldn't just sleep my way through it because the nurse had to take my vitals every 30 min since it was a new medication for me. Finally out of clinic at 4:40pm!

Mimi & WaWa are here!

Today Mimi (my mom) and WaWa (Wally, my new stepfather) came to stay with Kylie and me while Jim goes to Charlotte for some meetings until Wednesday evening. This will be a new world for them because they've kept her during the day but never overnight!

Thank you WCC!

Thank you to my friends at the Waynesville Country Club for sending me a WCC cap to keep my hairless head warm!!!!
I don't know how you guys do it! My head still gets cold even when it's 70 degrees outside!

Engrafting!

We got a pretty reassurring confirmation that my new donor has and is continuing to engraft! That means that the stem cells that I received from my donor have found their way into my bones and have grown into bone marrow which is now producing white blood cells, red blood cells, and platelets. Big picture is that I am building back an immune system, and one that will hopefully knockout any cancer cells that might be hiding. The doctors said that probably next week we'll do a blood test that will tell us the percentage of donor to me...we want the donor to be at least dominant and the higher the better, so we just have to wait and see.
The other good news is that symptomatically I'm still breathing better each day. Tommorrow is chest xray day, so I've been working on my guided imagery picturing a much better turnout than last week.

Groundhog Day

Yesterday I woke up in a funk feeling like I was in my own version of Bill Murray's Groundhog Day movie. This has been basically the last 20+ days of my life:

• Alarm goes off
• Roll my achy body out of bed
• Take a shower
• Eat breakfast
• Go to clinic
• Go back to the apartment
• Sit around until dinner
• Sit around until bedtime
• Repeat

There have been a few side trips to the hospital or out driving, but it's enough to drive someone a little wacky. I still can't be around many people so even a trip to the store is out of the question. And the energy level is so low that walks around the apartment complex have become a walk up the sidewalk in front of our building and back (about 50 yards.) The weather in the past couple of days has been chilly and rainy so even my 50 yard excursion has been put on hold until it clears up a little bit.

Jordan Lake

We took advantage that Danielle was here today. The walls of this apartment have closed in and my clinic room is about a 7'x7' box. So Jim drove the two of us out to Jordan Lake which is about 15 miles from the apartment. The day wasn't very nice, cold and damp. But we walked down to the picnic area and beach. It was great just to be out. I still can't be around many people so our options are fairly limited also since we don't know this area very well. (Yes, I lived here for 3 years, but most of the time was spent at work or at Duke with the last go round.) The pollen season is setting in so we'll have to start keeping an eye on how that affects my lungs too. For right now if it's not one thing it's another!!!

Saturday Clinic

With Danielle here, Jim was able to go to clinic with me. As anyone who has gone thru life with a newborn, mommy/daddy time is a rare thing...let's not even add all the stuff that is required with my transplant. So even mommy/daddy time in clinic was nice.
We learned an interesting and somewhat annoying piece of information today during clinic. Yesterday I went into clinic at 8:45am and finally finished up at 3:30pm. Today we went in at 8:45am and were finished by 12:30pm. The difference was simply efficiency. When we walked into our room this morning, all of my "goody bags" (IV bags) were already hanging from the machine ready to go and the nurse already had my pre-meds there. I still had to wait a few minutes to get blood drawn and such so it wasn't like there wasn't some drag time...but to be finished 3 hours earlier?! The nurses are great, but I think sometimes they forget that just because we have to report to clinic everyday, that extra time in clinic doesn't make any difference. When you hear your nurse say to another nurse to meet her in the break room because someone was selling jewelry as your IV machine's piercing "completed" alarm is continually going off...the annoyance level tends to creep up.

Day +21: Friday, 3/28/08

Looks like I have finally peaked this hill of this roller coaster ride. I'm sleeping better, which makes me feel better all the way around too. I've lost quite a bit of the swelling in my feet, knees, and hands which was uncomfortable as well. And Danielle is back down for the weekend which is a saving grace as always. There are still the spontaneous tears and moping, but they're getting shorter and less frequent.
I also found out yesterday that my left chest xray looks a little worse...however, the good news is that symptomatically I'm feeling better. I can actually sleep laying down and Jim said my breathing sounded deeper last night. The doctor explained that xrays can be a little slower to show changes so we're all crossing our fingers that my next weekly Tuesday xray will confirm that something is getting better. I say something because we still don't know exactly whether it's some sort of infection or something else. Let's just all pray for improvement or it could mean a lung biopsy...
I have daily exercises that I'm suppose to do. I'm getting better about it because it really does help me feel better to get the blood moving. The frustrating part is that simple knee lifts and arm circles (keep in mind that there are no weights involved) exhaust me like I'm spending hours in the gym!

Day +19: Wednesday, 3/26/08

Rough week continues. Physically pooped, mentally exhausted. Battling frustrations just because it"s already getting old and there's still a long road ahead. Really have to find a way to reset...and yes, I know I'm allowed to feel like this and I know that I don't have to be super woman, but I'm still working on busting that snowball that builds from depression making me feel physically worse and feeling physically bad and falling into depression. It's a tough cycle to try to break.
I want to apologize for screening phone calls too. Just haven't been up to talking. Jim has been great to intercept and make the calls that need to be taking care of.
On top of things, Kylie went back to the doctor again today. She's not gaining as much as weight as she should be, but she'd also been battling reflux and spitting up quit a bit. So we decided to try baby Zantac for her...wish us luck and hopefully it will ease some of Kylie's discomfort!

I Believe

i believe:
i believe in mind over matter.
i believe in the human spirit to prevail.
i believe in miracles and blessings, both great and small.
i believe in possibilities.
i believe that hurdles in life are meant to be jumped over, not a something to stop us.

from a beautiful card from my beautiful husband.

HAPPY EASTER!!!

Happy Easter From Jim, Heather, & Kylie!

Thank you Aunt Shan for the Bunny Onesie and MiMi for Kylie's 1st Easter Bunny!

Day +16: Sunday 3/23/08

Well...it seems that the Ambien worked. I only remember waking up twice versus twenty. It was really hard to shake the funk off however, but if that's what I have to deal with for now, no problem! Doesn't change the fact that I still have to sleep sitting straight up.
Clinic was fast. Labs, antibiotics, then release. I had to talk the doctor into sending me with magnesium pills instead of running it thru a 3 hr IV. Anytime you can get it thru food you save yourself many hours of being hooked up to IV supplements. Here is how I have to play the numbers game when my electrolytes get low:
Potassium-bananas, baked potatoes
Magnesium-eggs, greens
Phosphorus-(believe it or not) dark sodas (my preference is Cheerwine!)
Long story short-today I am able to emotionally deal with my daughter and life again. I wrote "Heather's Daily To Do List" to strike up my motivation again:

• Phyisical exercises
• Breathing exercises
• Drink at least 64oz fluids
• Eat small meals throughout day
• Get outside for at least 15 minutes
• Bathe
• Practice at least 15 minutes of PacMan (see earlier post about guided imagery)
• List 3 good things about today

I now actually remember about the tough days from last time and I again have to find my way thru them before falling deeper. This is the point where little notes will start popping up throughout the apt to remind me what I need to take care of...me!

Day +15: Saturday 3/22/08

Today was the worse yet. Exhaustion broke me completely. Cried pretty much the entire day. The doctor gratefully prescribed me some true sleep medication. It was so tough that a peep out of Kylie thru me into another crying fit. Jim was the best juggling both Kylie and me! I still can't figure out how he does it, he just says that he does what needs to be done...man, I'm a lucky woman! Jim even dragged the recliner out to the porch so I could sleep in the fresh air and sun (it was 75degrees and beautiful!) then he dragged my butt out of the apartment so the three of us could watch the sunset. He's amazing and pushes me just when I need it!

Day +12-14: Wed thru Fri 3/19-21-08

Back to standard clinic days...still awful nights. Still sleeping straight up, taking several inhalers to try to ease some of the noise and tightness, and taking happy pills to force my body to sleep. As rough as it sounds, it's primarily nights...days are pretty good outside of the coughing. The docs are trying an inhaled steroid that they hope will give me some relief in a couple more days :p ! My liver is freaking out due to one of the meds I'm on so the docs are also trying to find something different to substitute. It seems that everything is such a fine balance between fixing one body part but not compromising another! Silver lining...no more fevers!

Mange: Just Finish Falling Out Already!!!

Shaved Head Club

To add insult to injury...couldn't wait until I was in the privacy of the apartment for the hair to really start falling out. On Sunday, I called my dear husband and asked him to go buy a pair of clippers...the long hair had to go (most of it was going on it's own and getting EVERYWHERE!) Pure annoyance said enough was enough. He was such a trooper! Do you think that he ever thought that he would have to shave his wife's head?!?!

Catch Up: Day +8-11: Sat thru Tues 3/15-18/08

Went to clinic on Saturday after a tough night of breathing. Lots of wheezing and crackling all night long and couldn't lay flat...no sleep. Dr. Long asked me to agree to go into "9200" (the inpatient wing in the hospital) for a couple of days to monitor the breathing and see if we could figure out what was going on. Now with all the damage that I've had in the past with my crazy lungs, I agreed without hesistation. So at 4pm on Saturday, I had to check myself into the hospital...ugh.
It was a lot of just hanging out since it was over the weekend and believe it or not most doctors take the weekend off. I found out that I had to do a broncoscopy either Monday or Tuesday whenever they could get it scheduled. A broncoscopy is when they take a scope thru your mouth, down your throat, and look into you lungs for, in my case, infection or inflamation. It sounds worse than is was...I don't really remember any of it anyway. So fortunately I was able to be slid into the bronc schedule at 1pm on Monday, but it still takes several days to get all the results back. The nights are rough because my breathing is so labored and noisy. Have you ever tried sleeping straight up for an entire night? Exhaustion will let you do just about anything, but I sleep in short stints 30min-1hr at a time.
After getting very ansy to see my Kylie and of course getting out of the stuffy hospital room, I was released Tuesday afternoon. "Call us if anything comes up!"

Catch Up: Day +6: Friday 3/14/08

Ended up forgetting to check temp before clinic closed and found myself running a low-grade fever at 8pm. Had to go to the hospital for blood cultures and antibiotics. Didn't get home until midnight...guess I learned my lesson about watching the time!

Day +6: Friday, 3/14/08

Clinic routine changed a little bit due to the temp the previous day...blood work, 2 antibiotics (added the one they started the previous day), and then platelets. Platelets are just going to be standard every couple of days until my donor cells engraft. Decided it might be wise to take an easy afternoon so just headed back to the apartment and sent Jim away for an hour to recoop some of his sanity!

Day +5: Thursday, 3/13/08

Yesterday started out as a "normal" day for me but not so great for Kylie. Clinic was uneventful (don't get me wrong...that's NOT a complaint.) We think Kylie was having a reaction to her vaccines because she spit up every feeding...and I mean every feeding, that's every 3 hrs! But it was beautiful outside: 75degrees and cloudless! So Jim, Kylie, and I decided to enjoy the day by going to the Sarah P. Duke Gardens right behind the hospital. We walked some and sat some, fed Kylie...what a day! Then we decided that I really needed a big floppy hat and lightweight long sleeve since I shouldn't be in direct sun with my meds...so we went to Wal-Mart (it was 3 in the afternoon and not many people there.) Kylie spit up just as we were walking into the door. Then I decided to show Jim the town of Hillsborough on top of it all (just a leisurely drive!) Well, I was pooped and falling asleep on the way back to the apartment. I rarely take my temp during the day, usually at medicine time in the morning and night. But for some reason (and no, I wasn't feeling badly...) I decided to pull out the ole thermometer when we got home....100.2degrees...the cutoff point to call the clinic is 100.5. I waited 15 minutes and laid down. At 4pm my temp hit 100.4...time to call the clinic. I call the clinic if it's during open hours or have to go to the hospital during off hours. You want to try to get into clinic if at all possible because the hosptial is slow and tedious. "Come on in Heather!" To complicate things...what else was "scheduled" at 4pm? Kylie feeding! So we fed her quickly (good thing she's fast?!) Kylie spit up (see a reoccurring theme here?) Got to clinic about 4:45pm. Temp was at 99.9 (go figure!) But they went ahead and did blood cultures (sees if there are any infections). What that also means is that some of the blood has to be drawn thru my arm to make sure that it's not my hickman that is carrying the infection. Now my veins suck...there's not other way to say it. So after 2 pokes and a tag team of doctor and nurse to hold everything still so the vein wouldn't collapse, we got the blood we needed (the little white happy pill I took earlier helped me not to freak out ;) ) Tylenol, a 1hr antibiotic drip that gave me bright red checks, and I was sent on my way home. To top everything off, Kylie was at her prime last night which meant very little sleep for Jim...again...see a reoccurring theme? Kylie...can you say LONG DAY?

Day +5: Wednesday, 3/12/08

Turns out that plain and simple "Heather, your xrays and scans are just hard to read because of all the junk that has happened to them." So good news, the scans came back unchanged. I received platelets today...it's a good thing since I couldn't blow my nose without it being bloody (your vessels in your nose are very fragile and burst easily when your platelets get really low.)
Also, learned that one of the guys (Thomas) that I've met in clinic lost his hair last night. He's about 7 days ahead of me on the same regimine. Seems silly in the grand scheme of things that I was holding on to a slight hope that I wouldn't lose my hair again...shouldn't be a big deal when everything else is going so well so far, should it?!
Kylie now weighs 7lbs 1oz!!!! Big change when just 8 weeks ago she was 3lbs 11oz at her lowest weight! She's having memory flashbacks of the vaccine shots (at least that's what we're tagging it as ;) ) and will just wail out for a minute or so in the middle of nothing!

Day +4: Tuesday, 3/11/08

Fatigue hit me a little bit today. I took 2 different naps during the day after clinic. Tuesday's are chest xray day at the BMT clinic for all patients. They're used standardly to catch infections, etc. Unfortunately, we got a call that "something showed up" on my xray...can't they come up with some other line because I've heard that one too often already ;) ! So I have to go in for a chest CT scan in the morning. Going to be a long day...I already know that I have to get a platlet infusion which will take about 3 hours. Gonna be a long day for Jim & Kylie too (wait...most of these days are long for Jim since Kylie has decided to become colicy.) Kylie has her 2 month check up with her 1st vaccinations tommorrow. Man, I have a super husband, but I think we're going need to call in some reinforcements soon so he can get some rest!

Thank you Danielle!!

My best friend, Danielle Treadway, just left this morning after helping Jim and I out for the long weekend. She's one of many who are giving and helping us out so much especially due to the demands of our Kylie! Thank you Dani!

The True Me

Okay...it's time to be realistic! Fighting cancer is not a pretty battle, so I figured that it's not quite right to just have a cutsie picture of myself telling you who I am when that's not who I am right now. Let me introduce myself...I'm Heather and I've been on prednisone (steriods) since last October. Prednisone makes you gain weight and creates what is called the "moon face." Just call me the Pillsbury Dough Girl! Sometimes I feel like my cheeks are going to burst! I still have my hair, but the next week or two will be the tell-tale to see if I have to join the shaved head club...but I know some pretty cool people who are already members, so whatever will be will be!

Day +1: Saturday 3/8/08

Well, the day started off well. Felt pretty good and even the doctor was surprised I was feeling so perky on Day +1....then the porcelein gods started calling. I have been pretty fortunate in the past not to have many problems with nausea, but it looks like this time might catch it all back up to me! I've broken out all the stops with meds so it's just a wait and see game. Sometimes they're enough to stop the call of the porcelein gods and sometime they're not...it seems like right now they're not....

Day 0: Friday 3/7/08

Happy Birthday To Me! Today I received the present that is going to let me see my little girl grow up, spend many more years with my adoring husband, and continue to give all my friends and family grief for a long time! No, it's not the actual day that I was born on, but it is the day that received my new immune system that is going to finally distroy this damn disease by means of stem cells from an amazingly unselfish and giving donor who doesn't even know who I am!

Last time around, I was exposed to the concept of guided imagery. What that means is that you picture in your mind your disease going away, the various procedures working, etc. This pulls in the concept of how important of a role the mind plays which I wholeheartedly believe. Unfortunately, my mind tended to roam instead of focus so it wasn't a technique that worked so well for me. Well, this time around I took it a little more serious...I guess. A couple of weeks ago I wanted to find an image that worked for me when it came to visualizing the donor stem cells coming into my body and doing what they need to do. Well...let's just say it wasn't good cells destroying bad cells...it was more like Pacman eating up the Ghosts and the Power Pellets. And that's what my guided imagery became...a life size game of Pacman. Hey, whatever works, huh? To add a little more humor to an intensely emotional experience, when the nurse was helping the last of the stem cells drain through the tubing into my body I immediately starting singing "When Johnny Comes Marching Home Again!"

Day -1: Thursday 3/6/08

I'm actually writing about yesterday because yesterday I wasn't exactly in the state of mind to attempt to make much sense. I was lost in a chemo fog. Yesterday was the toughest to date. I think that all the "stuff" dumped into my system had caught up with me. On top of it all, my blood pressure ran a little scary low which doesn't help with any clarity of the mind. I came home after clinic, somehow managed to eat dinner, then headed straight for bed.

Day -2: Wednesday 3/5/08

I woke up early in the morning to find a little outbreak of the "Campath Rash." I was told that I could take Benedryl to help relieve the itch, but knowing that I would be getting IV Benedryl in a couple of hours, I didn't know if that was too close in time so I just sucked it up until I got to clinic.
Today was the one day of the pre-transplant that added an additional different chemo. So the day was labs, fluid, new chemo, old chemo, and Campath. The new chemo's primary side effect is something called mucousitis. And yes it is as lovely as it sounds. It is basically sores in your mouth and throat. So to help prevent this, I had to suck and eat ice for 30 minutes. I guess the concept is to freeze and constrict the blood vessels in your mouth so that the chemo can't get in there and kill the mouth cells which in turn causes the mucousitis. Doesn't sound so bad, right? Not unless your teeth are extremely sensitive to the cold! I do believe that this was the most uncomfortable part yet! But it could be worse!
The old chemo and Campath went off with a hitch and another 8:30am to 4:00pm day over.
Finally, caught the immediate story up to today!

Day -3: Tuesday 3/4/08

The transplant process is numbered as such: the days leading up to the day of the stem cell infusion are numbered as negative days ie. Monday was Day -4, the day of stell cell infusion is Day 0, then all the clinic days afterwards ar labeled as positive days ie. Day 1-potentially Day 100.
Tuesday was the same lineup: fluids, chemo, Campath. No problems with the fluids or chemo. I had been told that "typically" Day -5 (the first day of Campath) and Day -4 (second day of Campath) are like day and night. The first day you body is exposed to Campath it kind of freaks out, but then afterwards your body recognizes it and doesn't react with as many side effects. So the Campath was pretty mellow as well. That being said that it was a "quiet" day, it only lasted from 8:30am to 4:30pm!
One quick complaint...the Hickman catheter (looks like 2 tenticles sticking out of my skin that allow injections and draws without any needle pokes that can be impossible since your veins tend to shrink and collapse easily while receiving chemo) that was placed just below my right hand collarbone doesn't allow me to sleep on my favorite side so I just can't get as comfortable as I would like and can be down right painful if I wake up and find myself on that side anyway!

"The Beginning" Day -4: Monday 3/3/08

This past Monday I started the actual procedure that will lead me to my stem cell transplant. The technical name is call a non-myeloablative allogeneic transplant...mouthful, huh? In layman's terms it means that I get a lower dose of chemo plus a new trial antibody drug everyday from Monday to Thursday then on Friday I receive the injection of the donor's stem cells. The amazing part is that it's all done outpatient which means unless complications arise, there is no hospital stay!
So on Monday I had to go to the BMT (bone marrow transplant) clinic at 8am. They drew labs (layman's=took several vials of blood). Then I had to sign off on more forms that said that I was okay for Duke and the National Marrow Organization to track my health for the rest of my life (I just figure that we all need a few more Big Brothers in our lives anyway ;) ) I was hooked up to fluids for 2 hours before I could receive any of the meds. Finally, I received my pre-meds that should prevent any nausea and/or fevers then the first chemo IV infusion (or drip, for short) was hooked up. The chemo only took 30 minutes and didn't have any immediate side effects, no sweat, huh? Well, I had been forewarned about the next drug. It's a clinical trial drug that is used to minimize the risk for graft vs host disease (you've probably heard that term with organ transplants, but it also can occur with stell cell transplants.) Graft vs host can leave you on meds for the rest of your life or worse yet can be fatal (we definitely don't want that!!!) It is actually an antibody called Campath-1h (I'll explain details in a later post or this one is going to be 20 pages long!) The drip is 3 hours long! Soon after it started I got the chills...okay, not so bad, a couple layers of warm blankets cured it as well as the benedryl that they doped me up on so I crashed pretty quickly. Finally I saw the light at the end of the 3 hour tunnel...home free? Thought so until I rubbed my belly only to find out that I was covered in the "Campath Rash." Within a few minutes I was itching like crazy and then it spread to my back, arms, and scalp! That was annoying, but I got pretty nervous when my chest and breathing started to get tight...I was having a "typical" allergic reaction to the Campath. The nurse hit me up with IV hydrocortisone which fortunately relieved the rash and the tight breathing within about 15 minutes. But this also set me up for another added hour of observation before I was released to go back to our apartment. Finally after 10 1/2 hours, we were able to leave clinic at 6:30pm. Felt a little foggy in the head, but otherwise pretty darn good. The various steriods that I have been given makes me feel very unsettled, almost like being tanked up on too much caffeine so I do have to take a little magic pill each night to relax enough to go to sleep. Okay, this posting was suppose to bring you up to date (through Wednesday) but it's gotten too long in my opinion, so to make myself feel better, I'm going to start another posting for Tuesday.

Why "Borg Assimilator?"

Some of you might question the strange name of my blog....and no, I'm not a Trekkie! After my first round of cancer from Dec 03 to Apr 05, I was pretty much told that I would not be able to have children. Well, after meeting my wonderful now husband, we found out that we were pregnant against all odds! I'll spare you most of the details, but I didn't find out about the pregnancy until I was 3 months into it...yes, there should have been symptoms, but believe it or not, even the basic signs weren't there. Anyway, one of our ongoing jokes is that our precious little girl is so tough because prior to finding out I was pregnant, we took a trip with Jim's work to Carowinds and rode The Borg roller coaster a couple of times...it's a pretty bad ass ride that I'm sure Kylie enjoyed every second of it!

Tell us what you really think, Kylie!

Kylie LOVES her hat that her friends Brian McLean and Alice got for her on one of their travels around the world!!

National Marrow Donor Program

This program is what is going to save my life...literally. Please check out the information. I think many of you will be surprised about the ease of the donor process. We all have heard the scary stories of having to be drilled into you hips and bone marrow sucked out, but that is mostly a process of the past. Most donors merely have to painlessly have their blood filtered through a machine that collects the stem cells that will provide me with a new immune system that is going to wipe out my cancer for good.

www.marrow.org

www.marrow.org/HELP/Join_the_Donor_Registry/Myths_%26_Facts_about_Marrow_Don/index.html

Thank you Kevin McLean!

I want to thank Kevin for introducing me to both this blogger's site plus motivating me to keep up with my site as well!
Thank you Rod McLean for passing the website address onto me as well!
For everyone else...you should know that both Kevin and I were diagnosed with Hodkin's Lymphoma Stage 2B...supposedly rare cancer but yet a small world! I also must add that this disease chose the wrong two people to attack because these two people have no intention in taking it laying down (except when the exhaustion knocks us on our butts ;) !)

Catchup Posting (originally posted 2/4/08)

Okay...time to catch up a little bit on the info! Motherhood has definitely been a wake up call trying to learn how to be flexible and work around someone elses schedule!!! Kylie is wonderful! She is healthy and quite the dream baby (most of the time ;) !) She had her 2 week check up with her pediatrician last Friday and she has grown an inch (to 17 inches) and up to 4 lbs 3 oz. Her platlet count has doubled to over 230 which is great news as well.
I also got some great news this past week. I had a PET scan done for the first time since learnng the cancer came back. (I wasn't able to do the scan do to the risk to Kylie while she was in my tummy!) Well, my oncologist called and said that we have had an 80% reduction in the size of the noduals and lymph nodes that we saw on the CT scan that we did back in Sept! Also, we learned that the cancer hadn't spread to anywhere that we didn't see on that original CT as well! To top it off, the peson that my doctor requested to provide new stem cells to me agreed to be the donor! So as it stands right now, we will be going to Durham in the beginning of March to do the transplant. I am going to explain the WHOLE transplant process to everyone soon primarily because there are a lot of misconceptions about the process, and I hope that the explanation will potentially lead many of you to sign up to be potential donors!
Jim and I have to go to Duke tommorrow (2/5/08) for another chest CT scan because I have either an infection or inflamation in my left lung (just continue to cal me the complication queen!) We have to get it resolved before going into the transplant. We will be down there for Tue and Wed which means Kylie will be staying with Mom and The Newells (Bro Ryan, Shannon, & Jordyn.) It's quite an amazing thing to be surrounded by so many who are excited to help out where they can (have you seen Kylie's pictures? I can't imagine anyone who wouldn't want to keep her!!! ;) No biasness of course!!!)
Everyone's generously never ceases to amaze me. The offers for help continue to flow in! Jim and I's Sunday school class have worked out a schedule to provide food...I never thought finding time to fix a decent dinner would be this difficult! So thank you guys and gals so much for that! Our dear friend Betsy spent several days here with us. She works for Chili's with Jim and helped him with the opening of the new South Asheville Chili's as well as provided great companionship and helped us at home as well. Mom & Wally (new fiance!), the Newell's, and Danielle Treadway have all been saviors to us as well doing far too much to list! And I definitely want to thank all of you who have sent emails, comments, voicemails, etc with your support, offers to help, and love! One big request is that no one please get insulted or upset if I am slow to return messages. As I said, we are blessed to have so many amazing people in our lives, but it does make it difficult to keep up with email and phone. I love you all dearly and want to keep you all involved who want to be (which is a huge reason for this blog!)
Okay, I'm going to conclude this entry because I am dying to go take a picture of my phenomenal husband asleep curled up against our beautiful daughter on the air matress in our loft! I'll be sure to post the picture!

Kylie's Home!!! (orginally posted 1/29/08)

Kylie came home today!!! All this morning I ran around the house like a chicken with its head cut off trying to make sure that we were ready for Kylie to do the three things (as her Daddy says) that make up her life right now...eat, poop, and sleep! To give a little visualization, 1-I started enjoying my morning coffee again a couple of days ago so I was overtaken by the rush of not having that much caffeine since last August, 2-I had enough adrenaline pumping from excitement, anxiousness, and nervousness to set off most heart monitors, 3-as much as 1/2 of my body was trying to move as fast as possible, the other 1/2 was struggling to breath and move because I'm at the point of dealing with the chemo side effects, and 4-I'm an emotional mess from the roller coaster of especially the past 11 days and it seems to be coming out in the form of unexplainable tears more so today probably out of relief...so to say the least, it had to be pretty interesting to be the fly on my wall! Of course I had to add to my own stress level...I really wanted to run a few errands to get a few last items for Kylie prior going to the hospital, but I was running late (sooo typical of me :) ) so that idea went down the toilet! So after all of that, I got to the hospital around 1:15. Jim and I had just a few things to go over with the nurse (scheduled appointments, questions, etc) before we could break Kylie out of the hospital. We put her in her car seat...oh my gosh she really looked tiny (pictures will be posted!)...and off we went. Now we only live about 15 minutes from the hospital but by the time we were getting off our exit, Jim and I were both crawling out of our skin because of course the car seat was facing the rear and of course I had forgotten to put the baby mirror in my car so that we could see that she was okay AND she was silent the whole way home. So here I am...its midnight and Kylie should be waking up at any time now to eat again. I'm not expecting to settle down tonight and sleep very well (I know that you moms are saying "welcome to the club!") but it's the most incredible feeling having my daughter finally healthy and home!

Kylie's Momentous Day (originally posted 1/27/08)

Yesterday (Saturday) was a momentous day for our Kylie! It was the first time in her precious life that her platlet count went up! (Platlets are what stop us all from bleeding to death.) My chemo treatments had the same effect on Kylie so that it suppressed her bone marrow which creates all the stuff blood is made out of. Since her birth, she had been given 2 transfusions of platlets and 1 of red blood cells to sustain her until her bone marrow kicked in. The hard part has been that there aren't exactly a whole lot of "chemo kids" out there (in the big scene that's a good thing, but in this case not so much...) so there's really no research on how long it takes for the chemo to clear a baby's system or how long it takes them to recoup from it. We had been told anywhere from 2 to 4 weeks after birth. Her blood counts are really the only thing keeping her in the hospital. On day 9 we were told her platlet count didn't just go up a little bit...but it went up substantially! That little strong girl kicked her body into gear! The doctor told us that if she can maintain the count for 3 more days she gets to come home!!!! Please keep the prayers coming and the positive energy flowing like I know you all have put so much into already! Love you all and will keep you updated!

Starting of my blog (origionally posted 1/27/08)

I'm going to try something new for both myself and friends and family. I am going to attempt to start and continue a blog. Life has been so crazy and is far from calming down. I am so blessed to have so many people who love and care for me that I don't want anyone to feel like that are being kept out of the loop but it is hard to keep up with the number of phone calls and emails...and to be very frank, it is often exhausting telling the same stories over and over. So this is my attempt at a remedy for all involved! I have a lot to back track on which I want to do but it will take some time so bare with me if you see a blog that tells a story that occurred months ago. I'm also copying and pasting to a file on my computer so that I can go back and read the good, the bad, and the ugly as well as one day share it with my precious Kylie.