Last night we worked together like a somewhat oiled machine. Callie had a "shoe box" book report due which needed some final touches, and I wanted to get up to see Carla before it got too late.

McCall was done with her homework, so I asked her make lunches and to assist Callie with decorating the box and assembling one of the items Callie was making for the report while I went to the hospital. I was up there earlier in the day and Carla was looking so much better and resting a bit easier.

When I arrived this morning at the hospital, Carla was walking around in her room, and had been for the past 30 minutes! Her voice sounded less muffled. Wow! You have to remember that she has not had any steady sleep for the past 11 days. So, once she was done walking, I put a movie in the DVD player, logged into work, and she fell asleep.

The girls and I arrived later this evening to hang out with Carla and she improved even more from this morning. We bring her cards she gets in the mail, read her the school newsletters, share the kids homework the teacher sends home. Tonight the kids brought their nightly reading and went into the hall and read while I rubbed Carla's feet and legs. The kids are quite comfortable in the halls where they see leukemia patients and their families walking, doctors, nurses. I'm very proud of them with the courage they show. They are learning courage...just like me.

Thank you Colleen and family for bringing us dinner. We had just finished homework, and your meal was perfect timimg...almost anytime is a good time for food. We went right up to the hospital after our meal. Thanks again.

Turning the Corner

Forget Sigourney Weaver, Carla is one tough woman. She appears to be turning the corner and on the way to getting over this mucositis. Friday seems to have been the peak, and only felt slightly better yesterday. She was telling the doctor on Thursday that they have to fix this because she has her next round of chemotherapy coming up. Talk about looking ahead!

This condition resulted in much swelling from Carla's neck into her face. So much so that Carla was concerned about possible future swelling and breathing. I immediately notified her doctor of her concern and they contacted the pulmonary specialist to evaluate her. After a CT and chest X-ray, he suspected possible parotid gland infections as well as the mucositis and prescribed a special antibiotic. In addition, to alleviate any breathing issues, prescribed two breathing treatments to soothe her throat and also reduce swelling. Everything seems to be going in the right direction now. I hope to sleep a little a better tonight.

Even though she is tough, I know that she has been hurting and it hurts me. Please continue to send your positive thoughts. She is a lucky person to have so many friends and family that care so much. I hope she feels well enough in the next day or so to get online from the hospital and keep in touch with all of you.

Thank you Flitton's for dinner on Wednesday. Theresa and Raphael, thank you for the lasagna. Theresa is quite a cook. She is a gluten free chef! Thank you Casey for dropping off some bread and your dastardly good treats. You and Theresa should open an eatery of some sort.

Difficult day

Today has been one of the most difficult days. In the past few days the mucositis has advanced from Carla's throat into her mouth and tongue. Its a very painful condition and she has been on pain medications to help alleviate the pain, but only makes it tolerable, not even close to feeling well. After trying to manage it with asking for meds, they moved her to a pain pump. This pump can be programmed to deliver a continuous flow of medicine, push the button, and/or ask nurse for additional dose. This has been adjusted up over the past few days as they are trying to manage the pain for her. She uses all three options.

Carla was given a sign from Jonni which read, "What the Hell!" This is another one of those opportune times to use that phrase.

Many different cultures have been done to determine if this is something other than mucositis. So far nothing has turned up abnormal, and the doctors are administering broad antibiotics to make sure nothing is missed.

Her blood counts have been increasing daily. The doctors are telling us that this condition should clear up quickly when her white blood counts climb even higher. We are hoping the combination of treatment and count improvement brings a quick recovery. She has climbed to .8L neutraphils (800), over the standard neutrapenic level of .5L, but nowhere near normal. We will take any increase. Some of the nurses are willing to do a "Neutraphil Dance" to spark a surge of those cells. I tell them, "Go Shake 'n Bake."

Thank you Gisseman and Swensen family for bringing dinner. Not only are you providing our family dinner, you are also providing a meal for the caregivers that are needed for my children when I am not able to be there at dinner time, like tonight. You all are appreciated so much and I cannot thank you enough for all the support you are providing us.

Happy Birthday Callie!

Callie had a pool party on Friday January 21 after school. Grandma Pam, Grandpa Dennis, and Lisa Petersen helped out with the day.



Today is Callie's birthday, January 25th! She is 10, a full decade! She is growing into such a smart, loving, beautiful girl.



Even though Carla was feeling VERY uncomfortable, she wanted to see Callie open her presents. Carla was so happy to see the kids. Callie was SOOO excited to get her Hair Straightner. Callie wants straight hair and McCall wants curly hair.



Status: The doctors are calling it Mucocitis. It has gotten a bit worse since yesterday. This can happen to some chemotherapy patients when the body defenses are down, but not so typical this late in the cycle. Learning never stops.

Hospital stay

Carla was admitted into the hospital today around 12:30pm. She wanted to give me a break from taking her to the clinic and asked that her mom, Pam, take her. When she got there the main doctor immediately admitted her. He knows enough about Carla and could see that her symptoms required additional care. Her mom called me, told me to bring her "go" bag, and then off to the hospital. Not sure how long she will be there.

Over the weekend, Carla had started developing a very sore throat and mouth which prevented her from getting the necessary fluids and food. We called the clinic and followed their instructions. We actually went in at 6:00am on Sunday, hours before her appointment because of the symptoms. Thank you Patti, next door, for coming over until Carla's parents made it to our house.

Pam, thank you for taking Carla to her appointment, being there for her and staying so long. Thank you Dennis, her dad, for coming over the house so that the kids would have someone there when they came home from school. Jason, her brother, thank you for keeping things normal for the kids by taking Callie birthday shopping and helping them with their homework before I could get home. Family and friends working together, thank you.

Thank you Hopkinson family for the dinner today. Besides being delicious, it was a time saver and made sure our family was fed. Jensen family...what can I say? When you showed up this evening, I could feel your strenghth in "numbers". The "fun" bouquet will be more than fun! It was a busy day.

"Heavy" Day

Looking across the table at the doctor we are listening with deep intent and a bit of disbelief as he explains to us the information of the last test on the tissue and next steps.

Carla will need to have a Bone Marrow Transplant.

There was so much information discussed today, treatment plan, how it works, how its done, etc.

We asked many questions about the transplant and hospital's program, all seemed favorable.

Let's be honest, I had to pull myself together to ask some of the questions. This was not the conversation we were expecting to have.

At the end of the discussion I said to Dr. Petersen, "This is heavy stuff." He acknowledged me and said that if this were his family member, the transplant would be his recommendation.

We will provide additional information.

Thank you Susan, Sandy, Sally, Ray, Janice (work buddies) for bringing us dinner and the extra items.

Is Bone Marrow brewing...?

You know that feeling when you sense a change is about to occur, the anticipation, but you just don't know when? It's like the first 30 seconds of the Superman Theme song, before the horns blare and takes you to the next level of excitement and you fly out of your living room. We are right at that moment looking for a sign of Carla's blood count recovery.

http://www.supermanhomepage.com/downloadpro/download.php?file=91

Carla and her aunt went to the hospital for typical blood test, while I went to work...not being at the appointment is like watching a made for television show instead of being the people portrayed in the show. After checking her blood, they sent her home! No blood, no platelets! She simply sends me a text "Dont need anything today!! heading home!!". Now, being a numbers guy, that AIN'T good enough information. I asked if she got a print out of the results, and she just texts back "Enjoy your lunch and I will tell you later!! xoxoxo". What a stinker she is being!

Well, to spare all of you the same anxiety, Carla's hematocrit (Red Count) dropped from 29.2 to 29.0 over two days. During bone marrow suppression stage she has been dropping about 1.0 - 1.5 points per day. Although not discussed with any sort of medical professional, this tells me that Carla appears to be making her own Red Blood cells, compensating for the loss, and could be on the cusp of dawning a red cape and flying around the block a time or two (post 30 second mark on the Superman Theme). Without an actual increase in the hematocrit, my cape is over my shoulders but not tied for flight. "I don't dance unless I hear music." - Denzel Washington (Ron Boone) Remember the Titans.

Next 2 hurdles are even more significant; Whites/Neutrafils (infection fighter 0.4L/0.0L) and Platelets (ability to stop bleeding/clot).

Thank you Garn family for delivering dinner to us. We wish Jeff Garn a speedy recovery on his knee surgery from last month. Go Red Devils! Thank you Aunt Sandy for caring so much and taking Carla to her appointment today.

Small world

Get this! Her aunt Sandy showed up around 5:30pm. Lately, we haven't picked up food for dinner because of the many kind people bringing us dinner, so I order some Tres Hombres and went to pick it up just after 6. Thought it would be a nice change, and I LOVE Mexican food. As I pull into the parking lot I see a familiar looking blonde lady with an elderly woman leaving Tres Hombres. Believing that I recognize her, I zip into a parking stall and quickly walk to the front steps just as they hit the asphalt parking lot. IT WAS NAN! Our "drug pusher" nurse from the hospital with her mother. She just finished her mother's birthday dinner. Nan's mom was full of smiles, I gave her a soft squeeze and told her "happy birthday". Nan got the same squeeze. She told her mother that my wife Carla was a patient, and for me to tell Carla "hello". We had just seen Nan yesterday, and somehow the world felt so much more cozier. I felt like I had just seen a long lost good friend. With a spring in my step, I bounded up the stairs to the restaurant to get my "fix".

Status: Carla was very tired today. One day she's "swiffing" the floor, the next day she's moulded into the chair. Her aunt Sandy from Delta is staying with us for 2 days. She works at an assisted living facility. Sandy will be taking Carla to her appointment tomorrow while I go into work. I plan to go up there after lunch if she is still there.

Kids kept busy with school, soccer, homework. Callie has a birthday swim party coming up this Friday. Callie handed out invitations at school to a few friends. It will be the first birthday party that Carla has not attended, and will be my first solo parent party. Wish me luck!

What can YOU do?

GIVE BLOOD, GIVE OFTEN!

Many of you and others have asked "What can I do?". Giving blood is truly Giving Life. Of all the hospitals in the state, the Bone Marrow Transplant (BMT) unit at LDS Hospital uses the most blood. Since it specializes in blood cancers, that makes complete sense. People often need infusion while being treated or sustaining life. Carla has received over 9 units of blood and platelets in the past week, which highlights why donating regularly is so important. You may find out that your blood is really special, and you may be giving someone life.

Each time I look up at that bag of Crimson Life flowing into Carla, I am so thankful that someone was willing to take the time to have their vein tapped. Given the deep, rich color of the blood, most certainly the units of blood Carla received were from the U of U breed or sympathetic Alabama supporters. Even if you bleed a different color, there are other people out there who need YOUR blood.

American Red Cross is where blood can be donated. Follow the American Red Cross link to see where blood drives are occurring. You could be the lucky one to get one month's mortgage paid if you win the drawing this month.

Status: Once again, no increase in Carla's blood levels except for the expected bump from the infusion yesterday. She did receive platelets today to keep her above her threshhold. Rashes head to toe from treatment and infusions are a big nuisance.

McCall and Callie saw Tangled and had lunch with their uncle Jason. Thank you Jason for spending time with them.

Thank you to the Gorski family for their support. It was nice to see you.

Time flys when...

What a day! You would think that getting to the clinic at 11am in the morning with the possibilty of getting blood and platelets would be plenty of time for Grandma Rosie to take the kids shopping, eat lunch, and play games before we got home. Nope. We didn't get home until almost 7pm. Carla received 2 units of blood and 1 unit of platelets.

My expectation of her blood counts rising was met with an across board deficiency of Red, White and Platelets. Sheesh! Her Hematocrit (red) went from 26.8 to 24.1. Her floor is 24. I really thought we were going to see a rise. Her platelets fell to 15L, her floor is 25-30L. C'mon people, we need to PUMP IT UP! We'll go back tomorrow to check her counts and go from there.

McCall went to a soccer buddy's house last night and watched a scary movie, and ended up falling asleep on the couch after she got home. There she was at 6:30am, TV on, asleep. Callie also went to a friend's house for a few hours and was home by about 9pm.

Thank you Mom for doing the laundry that I had pre-sorted on the floor, and thanks to the kids for putting it away. One less thing to do this evening when we got home.

Inspiration 3

When we first came to the clinic I noticed a person just walking like she had somewhere to go and get there fast. She was wearing street clothes, not jammies. She had a mask, protective fashion wear, and no hair. I glanced up to see what was approaching so fast...was it a doctor, nurse, patient? Being new to the whole experience, I didn't want to stare, so I looked away for a moment. When my eyes came back up...she was gone! Where did she go, who was it? I don't know, "Flash" maybe? This same scenario happened again that first week.

On the day before Carla's discharge, our case worker Gayle had found someone we could talk to about treatment. This patient was going home that day for a few days of recovery before coming back for another week of treatment. A few hours later, she came into Carla's room; vibrant, determined, with purpose. Her name is Lisa.

It was her! Flash! "I've seen you," I said. She said, "Keep Movin', that's how you get out of here." She went on to say how good Carla looked, her color, her mobility, her health. We exchanged stories.

Sandi, Carla, Lisa

Lisa said "Leukemia was the best thing that every happened to me." She feels now that she has purpose, motivation, needs to make a difference, taking this time now to define who she is and what she wants to be. I never lost eye contact with her. Lisa spoke to my soul which was already on the same wavelength, amplifying my passion 10 fold.

She told Carla, "You are saving lives." Carla's unique presentation of leukemia is giving doctors another look at how to treat people in the future. She not only gave us inspiration, she provided us the means to provide inspiration.

Status: Carla is approaching the timeframe where we should be seeing her bone marrow kick on and to start making her own blood cells. Her next blood test tomorrow should tell if this process has started. She did receive platelets and no blood today, so we have a good baseline for Reds and Whites tomorrow.

Thank you Raines family for bringing soup. Nothing like homemade chicken noodle soup to warm the soul. I think I just plagiarized. And " Thanks" to the Davis family for the bread and gifts to our girls.

Sensitive or Responsive?

I guess it depends on the side of the fence you are on. Carla is reponding very well to treatment, masses are shinking, blood counts have fallen as expected. Then there are the side effects. Pretty much any side effect they warned could happen is happening, some mild, some extreme. You don't hear any one say, "The patient is very reponsive to side effects." As I have known for many years, our dear Carla is very responsive to any medication; pain relievers, anitbiotics, expresso shots, etc. So it is no surprise that she is sensitive to the side effects, or should we say a "delicate flower".

Let me sum up The Good, The Bad, and the Ugly:

The Good: Because Carla is so sensitive to medication, I believe she is very responsive to treatment.
The Bad: Because of her resposiveness to medication, I believe she is predisposed to the side effects.
The Ugly: Me. That was easy.

Today Carla got to skip a hospital visit because of the previous days visit and infusions. Very tired, but did get up and walk around. C'mon bone marrow...get started!! Maybe in the next day or so.

Many thanks to the Gleaves for bringing over dinner. Carla was feeling very cold today and she appreciated the warm soup and warm bread. In fact, all enjoyed.

Diagnosis?

Remember the record book discussion about the number of tissue biopsies? Well, we got some information today. The purpose of the last biopsy was to gather Cytogenic and Molecular data to help doctors make a subtype diagnosis and develop a treatment plan. Pathologist are looking for particular Chromosome and/or Gene abnormalities to place patients into risk categories, Most Favorable, Intermediate, and Least Favorable. Typically, a specific DNA marker is found and you are slotted in a group. Carla is not typical. There was not a marker which pointed Most Favorable or Least Favorable, so they placed her in Intermediate. In patients with AML, usually 60% have chromosome abnormality, Carla does not have abnormality. Now a test on me would surely show that I am one DNA translocation from a pre-historic specie. Although she is responding well to treatment, they are unable to specifically subtype Carla and in good conscience must use the Intermediate category.

What does this mean? Normally it means people may have to consider a bone marrow transplant if treatment plans are unsuccessful and higher relapse rates. But for Carla, she does not have the markers or symptoms which normally require transplant and the team of doctors are monitoring her before any other types of treatments are considered other than her scheduled 5 rounds of chemotherapy.

Status: In typical fashion, during her blood infusion today, Carla has more questions about the doctor's pregnancy and trying to "hookup" one of the male PAs with a friend than she has about her own illness.


Jonni - Thank you for the gift shop contraband "What the Hell!" sign. We still wake up in bewilderment with this on our mind.

New "admit"...

When we first arrived in the hospital to start treatment, there were many conversations going on about existing patients, personal lives, treatments, etc., and none that really meant much to us. But the topic which really caught our ear was the term "new admit", which means a new person being admitted for treatment. That was Carla on December 27. On that day, after her biopsy in the morning, we were directed to the nurses station to be admitted. There was Carla's wrist band and binder. Yes, binder.

Once treatment has started and the cloud starts to clear about you and you stop focusing on your situation, you hear so much more. We heard discussion that 3 people arrived over Christmas Eve and Christmas Day. Then while out for walks we hear, "we have a new admit coming late tonight". And then there were others.

We ran into a lady whose husband had been admitted that day and very much looked in a state that we could remember, "what are we doing here" look. We remember that day when Sandi reached out to us, and gave us comfort. We reached out to this lady in conversation and she opened up to us about her husband's story. We knew what it meant to be heard, and we listened. She had been talking for 15 mins with her tray of cafeteria dinner in her hands. I walked her to her husband's door and gave her a brief history of Carla and told her that things can get better, and that we were in her situation one week earlier. We have crossed paths twice since, each time exchanging well wishes and hope to each other.

An estimated 43,050 new cases of leukemia will be diagnosed in the US this year, and 12,330 with Acute Myeloid Leukemia. We heard of about 10 people coming into the hospital since we arrived. By the way, there are about 311,000,000 people in the US.

Status: Carla had her first blood infusion today, going back tomorrow for more blood and platelets. Besides being there a long time, the process went smooth, no reactions. Carla felt so good today that I let her do the dishes. Actually, she bullied her way into the dishes. :) Amazing what a unit of blood can do. Give her 3 units, my Honda needs a wash!

Thank you Lisa Petersen and family for dinner. McCall put it in the oven while we were at the hospital and was ready when we got home. We were very thankful to have that dinner. Thank you Susan Garrett for bringing Callie home after jump team. You are terrific.

Jinxed her...

Let me look back at a sentence in a previous post..."Without these little buggers, her body would not be able to stop a simple nose bleed, have massive bruising from a simple bump, or worse." Those little buggers, platelets, decided to take an early exit and stop doing their job. Today, a simple nose bleed did not stop for 7 hours! Like that noisy faucet in the night, drip, drip, drip, it would not stop. We went to Carla's schedule appointment today, only after the nasal faucet was dripping for over 4 hours.

http://en.wikipedia.org/wiki/Platelet

Once we got in the office, they drew blood labs. While waiting to determine the platelet count, the staff tried everything but voo-doo to slow the flow. Sit forward, ice behind the neck, pinch your nose below the cartilage, pinch your nose across the bridge, pack tissue in your upper lip, self clamping nose clip, expandable nasal balloon on stand by. Blood work came back in 45 mins. Her platelet count dropped from 56000 to 13000 in 3 days(15000 should be the lowest you go). Time for another bag a yellow gold, it flowed full force into her veins. Yes, platelets are yellow. Kerry the nurse had it flowing like a Las Vegas night club free pour of alcohol. Not 5 mins after the bag was empty, the bleeding stopped.

Every day we learn something new. These learning experiences can take an emotional and physical toll on you. When it was over, Carla was her "normal" self, and she stopped in to visit a fellow leukemia patient for quick minute before going home. That patient's name is Lisa H.

Lesson learned: If it flows, we've got to go. Go to the hospital that is.

Well, it's done. Carla requested that her hair be cut to a short length like mine. She looks beautiful. Hair is not who we are. I know that because I usually don't have much on my head, and I think most of you kind of like me. If I thought I could get more friends by having more hair, then I would be "mullet-man", flaunting my Wayne and Garth locks and a trail of friends.

Lets be honest, for women its a little different, especially when the moment comes to make that decision to move forward. I saw Carla make two decisions. The first was to call her stylist friend Sharon who has experience with this situation, her mother had to make the same decisions for her cancer. Carla agonized after that decision was made, right up until she looked in the handheld mirror with the eyes of McCall, Callie, myself and Bindi looking on at her new "do". She cried, she said she hated it. Deep breath. Sharon, Carla and I discussed going a bit shorter now that shock was over and that it wouldn't look much different than it was and would be better for managing it as the remainder fell out. McCall kept a watchful eye throughout the cut, and at this time chose to say, "Mom, you could totally pull off bald." What a brave statement. She is my rock. And she was totally right. She looks beautiful. As if a switch was flicked, the tears dried, her posture firmed, she engaged in conversation...she made her second decision...she decided to move forward.

Status: Tuesday is a doctor's appointment, check blood levels, maybe find out more about next treatment and additional diagnosis information.

Thank you to the Hoff's, Gaykowski's, Pinnock's for bringing wonderful meals to my family.

A bag of platelets

Earlier this week we were speaking to one of the doctors and they were telling us that we put some nasty chemicals and medicines into your body that make things not work so well. We know that, so we give you other medications to counteract those side effects, and while fixing those issues those medications will give you different side effects, in which we give you other medications to manage those. Basically a "merry-go-round of meds" to get you through treatment. This process continues even after you leave the hospital, which can be witnessed by the menegerie of bottles on our counter.

Today, Carla and I went to the hospital to get her blood checked and determine if she needed any infusions of blood or platelets. It was determined that here platelet count was getting close to 15000 floor level, 19000, the previous read was 46000. Without these little buggers, her body would not be able to stop a simple nose bleed, have massive bruising from a simple bump, or worse.

We were expecting a 2 hour stay, but ended up being there for close to 5 hours. Good things come to those who wait, maybe if you like hives. Her infusion of platelets was almost done, when she broke out in hives with a bunch of itching. Power in hand, my trusty cell phone, I call the nurses station just beyond a few doors to request the "dude", yes there are a few dudes that work there, to hustle over with some benadryl. He did warn us that this could happen, and Carla promised him not to let it happen. Oh well, $#!T happens. He arrived in less than a minute with a direct dose of benadryl into her port and very quickly had reduced reaction. You got to love medicine, and the people who know how to use it.

After our little jaunt and benadryl push, she was very sleepy and rested for many hours under a fabulous electric blanket from our fabulous friend Roni, never owned one until now. Hopefully I will not be replaced by that wired piece of cotton, it doesn't rub feet or shoulders.

Callie had gymnastics and Ute B-Ball game today. McCall had a basketball game she played in (they won)in and two futsal games (1 win, 1 loss). Thank you Steve, Sro's, Pam and Dennis for getting them there and bringing them home.

Our love to all.

Inspiration 2

People can be inspired by words, actions, movies, songs...

Our conversation with Sandi was a calming moment which settled us for the tasks of that day. These tasks are not for the weak at heart; head MRI in a claustaphobic "iron mask". Before completing that test, a nurse was requiring Carla to drink a solution for the next test, the body CT, where your hold your breath and breathe on their command in a tunnel. Finally, they save the worst for last...bone marrow biopsy. All I could do was hold her hand and talk about things that made no sense. I never looked at the procedure in progress. When it was over and a little snooze, they said you can go and we'll see you on Wednesday for the results. At this time Carla was a little groggy from the meds and had a sensation that her foot was asleep. She slid off the table, and attempted to walk, she about fell because "butt to toe" she was numb on the left side. We told the nurses, and once again we hear.."that has never happened before." There she goes again, being unique. Well, they figured all the lidocaine to numb the area must have "drifted" to that part of the nerves. She eventually regained full control of her cheek and toes in a few hours. We pretty much lauged it off. After the tests were completed that Monday, December 20, we went home to wait.

As instructed, we showed up to have a round table discussion with the doctors and directed usinto a waiting room, with pictures of cells on the wall. The table was actually oval. Our case worker from the clinic and doctor came in to discuss the news and take notes for us. Dr. Konopa, or Kelly, if you can't remember her name, started giving the news...your Head MRI is clear, your Blood and Marrow are clear...however, we founds some tumors...our hearts sank as we prepared for additional information. She described the locations of the tumors in Carla's body, then a bit of silence as we processed the info and emotion slowly welled from us. From across the table, she leaned slightly toward us and said, "This is curable."

Words of hope inspired us, "This is curable."

Status: Carla has been home since Tuesday evening and is doing very well, although tired. Our Thursday checkup showed that she continued to be "Neutrapenic", having ZERO neutrafils, which are the white cells that fight infection and protect the body. So please understand that visits during this phase are discouraged, if at all, she has not protection. Please call before attempting to come over. We have another appointment Saturday in which we anticipate an infusion of platelets and possibly some blood. She is also preparing for the inevitable, a short term loss of her hair. Her stylist cut her hair, and each of our girls participated in the cut.






Thank you Patricia, Harry, Isabel (Austin's) for the dinner you brought over. You are terrific people.

Inspiration...1

There are moments when you are hanging by a thread, anticipating that one last straw, then an event changes it and you forever. We've had 3 instances since our journey began.

Diagnosis day sent our world crashing, fearing the worst, fearing the unknown. Going into the Bone Marrow Transplant clinic the next day with a packed bag anticipating a long stay away from home was a lonely feeling. No one was there but us, we were alone. After Carla's blood labs were done, the Physician's Assistant and the Oncologist were in a quandary. She has no symptoms, no recordable levels of leukemia flowing in her blood, yet we have myeloid sarcoma cell in her tissue. Doctor felt there was no reason to strap her to a gurney and roll her away. We went home instead with no answers yet a big worry. We showed up Monday, with Carla's name on a touch screen check-in system...famous already. Still feeling alone, we sat across from a couple, she wearing a mask looking a bit worn, he sitting up straight right beside his wife. They could easily tell we were new (we both had hair, although mine receding), and most likely if they had to pick who was sick would probably pick me. They looked at us and said, "You are new here." Unemotional yes we answered. I am sure out of courtesy they asked "who is sick?". Carla replied, "Me." Noticing our unsettling posture, immediately understanding our state of mind, this kind lady reached out with the words that will ever be part of my soul, "It's going to be okay." She and Carla began a dialog. Carla got up from her seat, unnerved by the appearance of the masked lady and sat right next to her and began sharing her story and how we ended up in the clinic that Monday morning. With the head scan, body CT, and bone marrow still ahead of us that day, we heard inspiration..."It's going to be okay." Her name is Sandi.

Status: Amazing the kind of sleep you can get at home. Carla slept like a rock...me too. Earliest I have been to bed in 3 weeks, 10:30pm lights out. She was quite tired most of the day, as expected. Looking forward to tomorrow for "exercise" and blood tests. Wow, there are a lot of pills to take. Carla also go a little trim, she looks great. She will be posting that soon.

Thank you Jensen family for bringing dinner to us. Your family is so kind ALL the time. We wish that you could stay and visit longer, but given Carla's immune system is basically zero, we'll have to postpone the up close and personal with the "air hugs" and waves for awhile.

I'M HOME!

(not a good photo-but you get the idea)

Walking is such an important part of fighting off cancer. Keep moving is their motto. We are asked to walk 3-4 times a day for 20-30 min. I’ve been very good about it but “wrapping up your body” is a chore in itself. I have to wear a mask, plastic gown and gloves….plus pulling all my meds can be a little strange. The kids walked with me a few times (as well as some friends, husband, parents and brother). Thanks to all that made the endless circle more fun.

I AM HOME!!! What a feeling to lie in your own bed and smell the familiar smells. I love that I can hug my kids and snuggle next to my husband. First thing I did was get in the tub. Awwwww…felt so nice! It is the little things that make life grand.

I broke the record at LDS Bone Clinic by being discharged the quickest. Only 7 days when the traditional leukemia patient can stay up to 4 weeks. I am currently in “nadar” which means I have no white blood cells to fight infection. I have to be very careful what I do, who visits and keeping up on my medicine. I am tired but feel strong. I am trying to up my calorie intake and drink more water.

Thanks to all that have jumped to help support our whole family during this experience.
We are overwhelmed and feel very fortunate to have you in our lives.

Calling Doctor Jeff...

Status: As mentioned the other day, Carla will be coming home to recover before the next round of Chemotherapy. And the better news is that she most likely will get discharged TOMORROW, that's right TUESDAY. This might be the fastest chemo induction discharge on record! She is planning to be resting in her own bed tomorrow night. Phenomenal!

Nurse: "BP 110 over 64, crit 28.5 and dropping, neutraphils .9 approaching neutrapenia, platelets 102 trending down."

Doctor Jeff: "Bag her with a Twilight special, hold the platelets, keep the GCSF on stand by should infection be detected as her neutrafils are falling thru 500."

Nurse: "Yes Doctor Jeff.

Doctor Jeff: "Regardless of how she is feeling, prep the patient for a bilateral frontal lobotomy, Epi push, and...bring me a couple 10mg Marinol 'shots', I don't have time for a MaryJane smoke break today. Then send her home.

Being initiated into the Leukemia club requires a rigorous hazing of numbers, drugs, abbreviations, counter treatment drugs, cancer types, sub types, patient stories, telling your story, and a partridge in a pear tree. The first 2 weeks were a blur of unknown, however, as you settle in for the long haul your psyche goes thru a change were information becomes your daily dose of Valium, the more your know, whether good or bad, you have the means to make a decision. We are still waiting for the final diagnosis of the subtype of AML. That information will be deciphered once we get it.

Just a funny note: Callie had a random dream Saturday night. She was sleeping with a loaf of banana bread and McCall came in and took it from her and she started to cry. Then she was magically transported to McDonald's where they both had giant fruit smoothies. Callie then returned the banana bread favor by drinking half of McCall's smoothie when she wasn't looking. McCall says, "Why'd you do that?" "Cuz you took my banana bread!" Then she woke up. Even when they're sleeping they're poking each other. Love them.

Thank you Stevens family for bringing a great dinner over. You made it possible for us to be at the hospital with Carla longer where it gets lonesome.

With love, the Hennessy family.

Thanksgiving, not just a November day anymore.

Why do we wait to observe or celebrate holidays until the actual day in the year? Some holidays we do observe daily. Freedom, 4th of July: Our ability to speak our minds, choose our faiths, pursue our happiness. As Americans we observe and have the right each day we wake from our sleep and make our personal decision. Love, Valentines: Most people show some sort of love for someone or something daily, to their parents, children, companions, animals.

When it comes to being "thankful", Thanksgiving pops into our minds which quickly turns to steaming turkey, stuffing, football, Black Friday lists, and the triptophan naps on the couch with our pants unbuttoned. Many give thanks for things like the day off, the Friday after off, no Detroit Lions games on Turkey Day. Why not, they're all good things. Now, as I reflect since Diagnosis Day, December 17, 2010, images of peoples faces appear before me. Family members rushing to our house to provide support for each member of the family. Friends offering assistance with food, transportation, child supervision, communication. Doctors using all of their resources to determine the best course of action. Nurses providing an outstanding level of care that I have never seen before. My manager for her support and flexibility knowing that my priorities need to change for awhile. Carla's strength, which makes me stronger. Simple things like bringing me a bag of ice for Carla after a painful biopsy when I was exhausted, meals to our family, understanding, compassion, comfort when I cry, concern for our children, making sure I am well, listening. This list goes on and on.

I surely know we are not going to wait until November to have a Thanksgiving feast with all the trimmings and our hearts pointed out to all, and the small and big things for which we are thankful. Everyday I am thankful for something.

Status: Besides some fatigue, Carla is doing well. We learned a bunch more about the blood count numbers from our Physician's Assistant (PA) today.

Kids did their chores, finished schoolwork, made banana bread with grandparents, visited mom, and then chilled while watching Vampires Suck, the Twilight movie parody.

Jenny G, thank you for the wonderful meal tonight. As I told you, it was restaurant worthy. I'm thankful for you.

Love,
The Hennessy's

A little Christmas on New Year's Day

Let me cut right to the point with the status: Carla has been responding so well to the first half of the chemotherapy that the doctors may allow her to come home as early as THIS WEDNESDAY during the recovery phase of the first treatment! If that is not a late Christmas gift, I don't know what is! Although we still have the same prescribed treatment of 5 cycles of chemotherapy and radiation therapy, we may be able to have shorter stints in the hospital with daily drives for blood count checks.

Additional info that we may not have shared with everyone...During this first round of treatment, she gets 7 full days of chemotherapy, and somewhere around Day 14-18 she will "nadir", pronounced like Ralph Nader. This is where her red, white, and platelet counts are at there lowest for a few days and Carla is most vulnerable to any type of infection and bleeding, even possibly Bindi's or my silent "butt" deadlies. Not really, but I don't know many people who would be impervious to the olfactory irritation it could cause. Anyways, the doctors will have her on antibiotics and monitor her counts daily. We expect to have her home during this most critical phase of recovery, however there is no better place for comfort than your own home and your own bed. I look forward to providing any comfort she needs or desires and the kids will have solace knowing there mother is home and well enough to be here. Day 5 ends tomorrow afternoon.

This great development would not have been possible without her strong will, all your prayers, and your positive mojo. Please continue to push it our way and to others who need a slice hope in challenging time.

Even though we are still early in our diagnosis and treatment, we wanted to share that bit a good news with you all and celebrate a small personal victory on our way to winning the war.

By the way, the word "visitors" should be replaced with "Awesome People", "People who kick ass", "Caring souls", "I love you". So, maybe next time you call a hospital to ask when you can see a loved one, just ask "When are Awesome People hours?" Thank you all, you kick ass!

With all our love,
The Hennessy Family