Next Round of Chemo!

Carl has had a few weeks off from the chemo and has started to feel better. The two of us went on a vacation to South Carolina and that seemed to be just what Carl needed to pull him out of his slump. While on vacation he went for walks on the beach, bike rides, swims, hot tub dips and he even played some golf!

While on vacation one of our nurse’s called to let us know that Carl’s latest bone marrow biopsy came back negative for new growth :) Translation...Carl is still Cancer Free and will be moving onto the next round of chemo.

Now, we do not have a lot of information about what this round will be or the day to day break out of it we do know some things.

Carl is going to be going on an 80 day cycle, that is pre-maintenance ... this is an extra step that is involved because of his age and the additional risk factors.  During this stage he will have some chemo in-patient at Bronson. Others will be out-patient. When we were on vacation he was able to get his picc line removed, so he will need to get a new one put in, soon.

Today we were at the Doctors, and this round of chemo is going to start next week. On Tuesday Carl will be admitted to the hospital, at least until Friday, maybe longer...depending on how Carl is reacting to the medicine, and how long it will be until he is able to get it out of his body.

Great news for Carl is that he has one more week without the picc line in that he will be able to enjoy with no drugs and no other factors.

On a another note, Carl and I have been talking about a way to make sure that we are able to blog on a more regular basis, for those of you following that we do not see as often. We have most of our doctor appointments on Tuesdays, so we are going to update the blog on Tuesdays after our doctor appointments so that we have information to update everyone on. :D

A Long time coming

Hello all!

It seems I look at a calendar and realize that it is March 23 today... Holy Moly...Where has this month gone...where has this year gone?!?

Time is flying by for Carl and I, however sometimes the days can't pass by quick enough.

This last week was Carls last lumbar puncture (Spinal Tap) for a while. He was a great sport... I can not imagine 5 weeks in a row of spinal taps...and still want to do things in the afternoon.... You might remember that Carl was going onto a treatment with 4 days on and 4 days off of chemo. The first set of those have passed and he did great with them! He will start that chemo again this coming Tuesday

Quick update

Carls spinal tap yesterday went well again... when we came home it was beautiful outside so the two of us did some light yard work around the house and enjoyed the nice weather.  Last weekend Uncle Kevin and Aunt Cheryl came and spent the day with us, they also brought up Duke and Bella. You can tell that Carl is even more happy with some of the normal being restored to our house.


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Carl and I also wanted to give a shot out to the Carl club and Ms. W's class at Douglas Road Elementary. There is a girl that goes to school there who's name is Morgan, she goes by Mo. Her mom and Carl's mom are good friends. Morgan wore her T-shirt for Carl to school and formed a club, called the Carl Club.  They have been drawing pictures to Carl and writing notes to him as well. It is always fun to sit down and read all the notes and look at all of the wonderful drawings. We want to thank all of you!!!

                   

**You can follow Morgans Blog at http://morganspot.wordpress.com/ She is a wonderful writer, and has some funny jokes posted on her site!

Day 1 of Round 2

Just a quick update for everyone...

Carl did well with his Spinal Tap today... just a sore back, other than that... no side effects. He will be getting Chemo everyday for the next 4 days in a row. They are going to try to check him into the hospital overnight tomorrow so they can watch him and keep him on fluids when they are introducing the new chemo drugs to him, and they are using much higher doses of the drugs.

After the Spinal Tap today we drove out to Holland to officially complete the Disability paper work with the Social Security Department... we should find out soon if we are approved.

Good night all!

T-shirts... Round 2

Hey guys, we have had a lot of questions and interest in more t-shirts, we will be placing a second order soon... Check the link out below for information...and some cool stuff from the people we ordered the shirts from!
http://carlporter.blogspot.com/p/tshirts.html

Consolidation

Okay family and friends... it is time to CELEBRATE!!

Carl is officially being moved from Induction to Consolidation in his chemo treatments. Here is some information we have about the different stages to the treatment.

#1 Remission induction: The purpose of the first phase is to bring about a remission. A remission means there are no signs and symptoms of the cancer. More than one chemo drug is used and high doses are given. This phase lasted 40 days.. THAT'S TODAY!  An additional treatment that Carl got was to keep the leukemia cells from spreading to the central nervous system This involved a high-dose chemo, put right into the spinal fluid. Induction Chemo can have the most serious side effects, including infections. This is part of the reason why we were in the hospital for 24 days... the doctors want to keep a close eye on Carl.  This is also why Carl is on so many antibiotics. 

#2 Consolidation: Because Carl is considered to be in remission, the next phase is a fairly short course of chemo using many of the same drugs in high doses that were used before. This treatment phase lasts for 56 days. Central nervous system treatment will be continued at this time (These are the spinal taps). This phase of treatment is less intense (and less risky) than induction.

#3 Maintenance: Once the number of leukemia cells has been reduced by the first 2 phases of treatment, this last phase can begin. Maintenance, which usually means lower doses of chemo drugs, lasts about 2 years. Central nervous system treatment may also be continued. -- We are not here yet!!

Okay, so now that you know what the treatment stages are here is a little bit about Carl...

We will hopefully start Day 1 this Tuesday. Carl will be getting Spinal Taps weekly for a month and will be adding some additional medications. If all goes according to plan he will Start on Tuesday, February 28, and finish on Monday, April 23.  Everything should be able to be done out-patient. Only thing that would require him a overnight stay will be any side effects of the chemo... GREAT NEWS!!!  (Sorry 4th floor Bronson, we love you... but don't really want to come visit you!!) 

Now... Information about Bone Marrow Transplant. 

The purpose of a Bone Marrow Transplant is to increase the percentage of long term survival. 

Doctors consider a patient will A.L.L. one of two risks, Standard or High ... They measure this on 3 main things. 

#1 Number of White Blood Cells(WBC) - If you have over 30 (Thousand) WBC when you are diagnosed with Leukemia you are considered High risk--Carl had 29

#2 Minimum Residual Disease (Response to Chemotherapy)- If you need to repeat your induction phase of the chemo treatments in order to have a remission you are considered high risk-- Carl was in remission on day 15 of the 40 day induction cycle 

#3 Chromosome Abnormalities * (See note below for information about how this happens)- You are considered high risk if you have more than 5 abnormal chromosome's.-- Carl has 3 **(See below for the number of cells a human should have)

So, Carl is not considered high risk on any of the three mentioned factors to risk. At the current time, we have been advised to not proceed with a transplant. 

Again, the purpose of a Bone Marrow Transplant is to increase the percentage of long term survival. 

High Risk ALL patients have a significantly lower chance of survival, therefore, a transplant is recommended to increase the chance of survival. 

Standard Risk ALL patients, AND patients who receive a Bone Marrow Transplant are at an equal chance of long term survival, therefore, a transplant would have zero benefit for Carl. A transplant would also expose Carl to a higher risk of infection, and he would have to deal with graft versus host from the donor bone marrow. ***(See below for graft versus host)

As far as Carl goes.. .He is doing well, he is still cooking and doing dishes...and still has his sense of humor. He is having some cabin fever right now, and is looking forward to warmer weather so he can lay outside in a hammock... you should of heard him talking about it this afternoon, as the snow was flying....

* Chromosome Abnormalities

Chromosome abnormalities usually occur when there is an error in cell division. There are two kinds of cell division.

1. Mitosis results in two cells that are duplicates of the original cell. In other words, one cell with 46 chromosomes becomes two cells with 46 chromosomes each. This kind of cell division occurs throughout the body, except in the reproductive organs. This is how most of the cells that make up our body are made and replaced. 

2. Meiosis results in cells with half the number of chromosomes, 23 instead of the normal 46. These are the eggs and sperm. 

** Number of Chromosomes in a Human

The typical number of chromosomes in a human cell is 46 - two pairs of 23. One set of 23 chromosomes is inherited from the biological mother, and the other set is inherited from the biological father.

*** Graft Versus Host

Graft is what the donor bone marrow is referred to during a transplant. Graft versus Host occurs when the new bone marrow attacks other places in the body, most common places where graft versus host occurs is on the Skin, eyes, and mouth..causing severe dryness and rashes. Less common places that it is seen is in the gut, liver, and lungs. 

Update!

Hello all!
First off, I want to start off by saying I am sorry! I know that I am slacking on my blogging!

Last week Wednesday we went to our doctors appointment, our doctor is very pleased with Carl 's progress and wanted him to get another bone marrow done so that we can head to Chicago and meet with some specialists about a possible bone marrow transplant. Thursday we had to go to Borgess to have the bone marrow done because Bronson was full. (Borgess was also full but committed to squeezing us in, however was not sure what time) Borgess asked us to be at the Hospital at 7:00am to get Carl checked in. When he gets his Bone Marrow they have to use sedation on him and there for is not allowed to eat or drink for 6 hours before the procedure. The tricky part was that because they did not actually have a n appointment for Carl, he was not going to be able to eat or drink from midnight until potentially late at night. He was worried about his sugar levels dropping that he decided that he was going to stay up until midnight and EAT...

We had dinner that night, which was tacos... Yummy! THEN Carl ate a M&M ice cream cookie sandwich, then that was followed by a personal pizza, which was soon followed by a freezer pop (Frozen Juice) THEN he ate a TV dinner meal of Salisbury steak and mashed potatoes... which of course he had another M&M Ice cream cookie sandwich... in between these he also snacked on cheese its (which he enjoys eating with laughing cow cheese), pickles, and pistachios... I think we can conclude that Carl ate a TON that night ;)

The next morning was the bone marrow that lucky for us had a canalization and Carl was out by 10:30, we did some negotiation with the Doctor so that they would let us go home after 45 minutes rather than 2 hours!

Dr. Liepman gave Carl and I the OKAY to travel to the east side of the state to attend T.H.A.N.K.S (Tailgaters Helping Aid Needy Kids Spirts) This is a great weekend full of great people coming together for a great cause. This organization, which held its 12th annual event (all of which Carl has been a part of) helps raise money for a family that has a child with cancer.

While we were in town we were able to visit with our dogs which it was VERY nice to see them!!

I also got a tattoo in support of Carl... It is a butterfly, which is a symbol of blood cancer, It has orange coloring on its wings, which is the color of Leukemia, the center of the butterfly is the cancer ribbon. It is located on my left wrist, it is on the underside. I chose to place it here because it shares the same hand as my wedding band... and when I place my hand on my chest, the butterfly is close to my heart, just like Carl is :)


Tuesday we left for Chicago and had dinner with my mom. Wednesday this week we went to downtown and met with the Bone Marrow specialist who is currently leaning towards the decision of no bone marrow transplant. We will find out this week what that decision is 100%. When we find out for sure one way, or the other we will be posting on here what the deciding factors are.

As of today Carl is doing well, he is eating LOTS and has gained back his weight, and still holding onto his hair. He is very happy that it is up there still, but is worried that if he goes to shave his head, that is will pull the rest of his hair out too!

Please keep an eye on the blog I should be able to post more information about the bone marrow transplant and the finial decision tomorrow night... Sorry to hold you in suspense ;)

This week...

Sorry we have not posted in a few days... it is hard to sit down and be on the computer when I am home... The last time we updated the blog was Monday... So here is how our week has been. 

Tuesday Carl needed Platelets, so we went to Bronson to get those... while we were there Carl was able to get in a nice nap. Before Platelets Carl and I went to get back massages done... MAN it was soo nice and relaxing. :)  

Wednesday was a CRAZY day!! We got up at 6am to hit the road to go to Bronson. We had to be there at 7am to get ready for Carl's 8am LP.  They needed to give him platelets during the procedure to reduce the risk of any side effects. Carl cut off his blood type band that the hospital gave him on Tuesday, which apparently is a big deal...So they had to re-type him, which took some time. Then they finally hung up his platelets and got him 30 minutes late into his LP. After his LP he needed to lay flat for 1 hour. We needed to go to the Cancer Center after the hour was over for chemo, however we did not know what time they were expecting us. (Carl was ready for Lunch) so we found out that the Cancer Center was not planning on us until 2pm. After the bag of platelets was finished we left to go to lunch. Carl and I enjoyed a nice lunch at Mongolian Grill. While we were eating the hospital called us to tell us that they messed up and that Carl actually needed 2 bags of platelets and that we need to come back so that he can get the rest of the order. So back to Bronson we went... While we were waiting for the platelets to run into Carl's system we received a call from the Cancer Center and wanted to know if we were on our way over there. I told them that we were still at Bronson and that as soon as the platelets were done we would be on our way. The nurse was calling to tell us that our insurance would not pay for the chemo if it was done at the Cancer center because they do not consider it a hospital facility.... So we went to the cancer center to meet with our doctor and to re-schedule Carl's Chemo. 

Meeting with the doctor went well, we waited for a long time because Carl's forgotten bag of platelets took a hour and 45 mins and we showed up at 2:30 for our 2pm appointment. (We were seen by the doctor at 4:30) Our Doctor said that she is VERY impressed with Carl's progress and that he looks great. She told him he is doing a great job with his diabetes and that next week we need to see her again, and that she was going to start tapering him off of his prednisone **This is the drug that is inducing the diabetes**  She is hoping that we can get to Chicago next week as well for consultation visit.

Carl's Chemo was rescheduled on Thursday at the hospital. 

Bonnie came up Wednesday night and made dinner for us, I went to work on Thursday and Bonnie drove Carl to the doctors for his Chemo Treatment.... This again turned out to be a long trip with lots of hiccups. 

Friday Carl's Dad and Sister fought the winter storm and came out to spend time with us. 

Carl is doing well, he has decided that there is a limited amount of things he can actually do right now, so he will do those things and no one else... Therefore, I have not cooked a single meal, or did a single dish since we have been home... I promise I am trying, but those are things that Carl wants to do right now... And the food is Delicious!!!  ( I had the best venison I have EVER had for lunch the other day).

Carl is having frequent head aches and enjoys sitting in the chair with a blanket draped over his head, makes him feel better. He often gets head aches when in the car as well. He has not had any nausea with his treatments. His hair is thinning, but it is still there. **No, it does not feel loose** ( I asked him one night if it did) He is still having trouble sleeping through the night, he is up often to go to the bathroom, and somehow a snack finds him every time he wakes up. Carl's White Blood Cell count dropped with the last chemo so right now, more than ever, it is very easy for him to get sick. 

Next Wednesday is our appointment with our Dr. and we are keeping our fingers crossed for Chicago!

Loving Home

Monday, February 6, 2012

Today I woke up alone in bed... Carl had trouble falling asleep last night and slept on the couch. This morning we went to Allegan Hospital to meet with our Dr.'s nurses for labs to be drawn. (she has an office there...don't worry...it was a planned trip!) We found out that Carl's platelets are low still and that he will need some Tuesday (Tomorrow) to prep him for his LP that is scheduled on Wednesday.

Tomorrow we have back massages scheduled at 10:15 and then his platelets are at 2:00.

That is really about it... spending lots of time resting, and Carl has been cooking meals at the house... He went outside with me tonight to help me find what is killing my chickens, but that was a short, unsuccessful trip, maybe tomorrow night we will be more successful..and the chickens a little more safe.


Good night all... we are sooo happy to be home :)

Short and Sweet

Today is going to be a nice and short post.

I know the picture is a little blurry... but just so you all can see... that is Carl AT HOME in the living room with a smile on his face...

We did some running to get his meds and filled up our house with food. We are both very tired... Carl just laid down in bed to go to sleep, all I heard from the room was OH MY I MISSED MY BED!!

Good night everyone!

Chemo Day 18

Saturday, February 4, 2012

Phew... this has been a long week... I can not believe that it is Saturday already!!

Thursday Carl had his dad, Grandma, and Aunt here to visit him. I went to work so was only around in the evening. Carl laid down at about 9:30pm and I sat down in the chair with my work clothes and shoes on still, well, be both passed out, and our RN did a great job to keep the interruptions minimal. Carl had a pretty bad head ache that evening as well, so they gave him some pain killers that helped him to sleep some.

Thursday was also the third week we have been checked in at the hospital.

Friday the doctor told us that she is working on getting us an appointment for Chicago to meet with the Bone Marrow Specialists towards the end of the week. We are not 100% sure when yet, or if it will even be next week. I asked her if Carl would be able to get a massage after we are out of here and she told me yes!! This is great news because Carl's back is sore from the bed. The doctor also told us that we will be going home soon, she just does not want to compromise Carl's health.

Friday honestly was the worst day for Carl so far... he is ready to get out of here, you can tell he is not happy. When I ask him what I can get him to make him happy he says home. I ask him what else and he says my truck. He again had a pretty bad head ache all day and was on pain medication for that. He keeps telling the nurse it is a hospital induced headache and he needs to go home to cure it.

Carl's dad and a close friend of ours, Nichole (And her baby Megan) came to visit us yesterday, it was pretty quiet and Carl and I were entertained by Megan who is 10 months old and a happy little baby.

Today is going to be another quiet day, Carl again has a head ache and is sitting in a chair with a blanket over his head resting. As I am writing this he asked me if I was blogging... I told him YES! and asked him if my typing was hurting his head, and he told me... "No, I am just thinking what I want to do when I get out of here... Camping with you and the dogs..." Looks like we will be planning a camping trip soon!!

Its a weekend so the Doctor comes a little later that normal so we should be seeing her later today. My mom and step dad are coming today so we both are looking forward to seeing them, and having a nice a quiet day. Hopefully soon we will be headed home!

Day 24 of being in the Hospital, Day 18 of Chemo

What is Induction Chemotherapy?

Wednesday February 1, 2012 (Chemo Day 15)

Induction Chemotherapy:
Carl was started on induction chemotherapy. The goal of induction therapy is to bring the disease into remission. Remission is when the patient's blood counts return to normal and bone marrow samples show no sign of disease. Induction therapy is usually very intense and lasts about one month. After induction chemotherapy, the next step most likely will be transplant. Remission is a term that doctors frequently use with patients and it refers to the response of the cancer to the therapy. Complete  remission means that the cancer has completely disappeared with the treatment. Remission does not mean that the patient is cured. Blast cells are baby cells that prevent adult cells from doing what they are suppose to do. The way that this is tested is through a Bone Marrow screening. Carl had his second bone marrow on Tuesday. Today we were informed that there is NO blast cells in his bone marrow. What this means is that the chemotherapy is working and there currently is not bad cells in his blood not allowing his good cells to work. Now his good cells are going to work on developing still. He is also continuing his chemotherapy. He will continue to get bone marrow tests done to continue to monitor the blast cells....

So Again.... in case you missed it before...


CARL HAS ZERO BLAST CELLS IN HIS BLOOD... THIS IS THE SHOWING THAT THE CHEMO IS WORKING AND HIS BODY IS WORKING ON DEVELOPING THE GOOD CELLS!!!!


WAHOO!!!!

As soon as we got this news, Carl crawled into bed and took a long nap. I think that he is releaved from the great news and was able to finally sleep. Tonight we went for a walk around the hospital and are headed to bed a little early... Not a busy night so we should be able to get some sleep. Tomorrow Big Carl, Pam, Grandma P and Aunt Marlene are headed up to see Carl.

Day 15 (Chemo Day)

Wednesday February 1, 2012

Today is a Chemo day.

Last night Carl was able to sleep. the two of us were up until 1:45 talking, and making plans, then decided it was time to turn out the lights.

Yesterday morning Carl woke up and his blood sugar was low, but he was not able to eat because of his tests in the morning, so they gave him a shot of sugar to raise his levels. He had his LP (Lumbar Puncture) then laid on a bed still for about an hour. After that time was up they took him to do his Bone Marrow.

Once we came back to the room they checked his blood sugar levels so he could order his lunch. His blood sugar level was so low he had pepperoni, ham, chicken, sausage, pizza...a side salad...green beans...chocolate yogurt shake...then he took a molasses cookie when no one was watching (or so he thought!)  He was a happy camper with how much he ate!

Dinner he had a little problem ordering what he wanted down stairs has him on a different carb. diet than the doctor wants him on, so he was not able to order everything he wanted. He was "STARVING" so I went and got him more food that was low in carbs... he was much better.

We took nice long naps yesterday between lunch and dinner, pretty much the entire time frame... Was nice to catch up from the crazy night before.

This morning the Doctor was is. She is working on getting our appointment's in Chicago set up. When she does this, she will share his blood work with them, if his counts are not high enough they might tell her he needs to wait to come out there. If we go too soon, and he catches something as small as a fever they will hospitalize him out there and we do not want that happening. The doctor also put Carl back on a general diet. Told him he needs to continue to watch what he is eating, but he needs to eat first. She thinks that his sugar levels are so low because we are not allowing him to eat. He is extremely happy about this and we are going to head down to get some food.

Day 13

Monday, January 31, 2012

Today was a relaxing day here. The doctor came this morning, confirmed that Carl will be getting a Spinal tap and Bone Marrow in the morning. She also made phone calls to the hospital that we will be going to for the bone marrow transplant. They have some openings this week and next week for consultations. She believes that we will be able to go home soon... but that will also include a trip to Chicago to meet with the surgeons.

Aunt Sue, Steven, David and Andrew came and visited for a while today, it was nice to see all of them. Carl ate his nightly mid night salad a little early today because after midnight he is not allowed any food or drinks.

You can tell Carl is sick of being here, he is a little moody with the RN's ...taking to long to get his blood sugar, which is preventing him from eating when he wants too, or them telling him, when he is starving, that he needs to wait an hour and a half to eat...or the fact that the night RN turns on all of the lights in the room every time she comes in...which is often...

He is getting 18 packs of platelets total. Which is 3 bags, He just finished his second bag, his third bag will be at 4 am. He currently hooked up for the antibiotics that he is getting. I was able to talk the RN into waiting a few minutes to put on the next antibiotic so that he can be un-hooked long enough to pick out his salad.

Tomorrow's Spinal Tap (LP) is at 8am, and his bone marrow is at 10:30... He will be STARVING when he is all done tomorrow.

Dear Darin

Darin,
Mark is correct... you are not search-able on Facebook.... You will need to add us :)

Hopefully we won't see you Thursday!!

Day 12 (sorry for the break!)

Sunday January 29, 2012

Day 12.. Carl wants to make sure you all know its Day 12 of Chemo... NOT day 12 of being here... it is Day 17 of being here.

Okay... I took a few days off from blogging so I know this one will be a longer one... but I will catch you all up to speed by the end of today's blog.

Medically nothing too exciting has happened with Carl since Thursday. He did receive some blood and platelets on Friday but other than that.. not much.

Friday and Saturday night we had one of our favorite RN's who unhooked Carl from IV's at night, and made sure that no one bothered Carl after 12:30 when the last of his medication was completed until 6am when they have to start drawing blood for tests. This was super nice, Friday night Carl says he had the best night of sleep, and Saturday night was a good night too!  (The same RN is back tonight so he is already looking forward to another good night of sleep).

Thursday (After the blog was posted) We had a visit from Dean, who is from Carl's work, And Grandma P and Marlene came up for the majority of the Day. Big Carl and Pam were here as well and spent the night Thursday night.

Friday we had so many visitors come through here that Carl and I both thought that it felt like Saturday. Grandma and Grandpa W came up and brought Aunt Karen and Uncle Dave with them. They were able to stay for a good part of the Afternoon on Friday. Aunt Cheryl, Aunt Kris, Hayden, Brandon, and Braelyn all came up in the afternoon and then Uncle Kevin and Kaleb came up later in the evening. That crew stayed the night into Saturday.

Saturday Morning I asked the doctor if she could write 2 orders for me. The first being that Carl could be unhooked from the IV's unless he was getting antibiotics and the second that he could make a trip to the parking garage to see the dogs. Kaleb, Hayden, and myself drove up to Allegan and picked up Duke and Bella from the Kennel. The dogs were SO excited to see us they knocked me over in the waiting room. We then went to our house and packed up stuff for the dogs and drove back to the hospital. Carl was able to go out to an enclosed section of the parking garage and see Duke and Bella. The three of them were VERY excited to see each other.

From there Duke and Bella went home with Uncle Kevin, Aunt Cheryl, Kaleb and Hayden. They are dog sitting for us while Carl is working on feeling better.

It is now Sunday Morning. The doctor came in this morning and told Carl that we will be adjusting the insulin that he is getting because his blood sugar levels are low in the morning. She also confirmed that the tests that Carl needs done will not be happening on Monday for sure.

Carl has already ate his ham and cheese omelet and a pancake and hash browns (and a pudding cup) and is out of the shower. He really has his routines down to a science now. We are suppose to be having a crowd of visitors again today, but it started to snow last night. We will see who all comes out today.

Day 9

Thursday, January 26, 2012

Two weeks today, and will not be making it home before the weekend. Last night before bed the doctor came in and said that Carl is looking blue. She gave orders to the night nurse to keep him off of his IV's as long as possible so he can enjoy himself a little more. Carl and I went out to the waiting room area on the 4th floor and played battleship for a while. It was nice to get up and leave the room for a bit.

This morning we woke up early to try to catch the sunrise, (Dr Liepman told us about a nice spot that has a great view) however it was a little foggy this morning that we stayed in the room.

Can has officially been diagnosed with steroid induced diabetes... He said its actually a good diet... because you have to be poked if you want to eat... and no one wants to be poked.... HAHAHA!

Yesterday we had a visit from someone to teach us what he should be eating and how to count carbs. Then today we received a hour and a half lesson about how to manage diabetes. Carl received a meter today and we both got to practice drawing insulin up and injecting it into a square pad thing that is made to look like skin.

Today is not a big day for Carl as tests were moved back to at least Monday. Main goal today will be to distract him as much as possible and forget that we are still in a Hospital.

We can not wait until tomorrow nights staff are back, its the group of RN's we like the most!

Day 8 (Morning after a rough day)

Wednesday January 25, 2011

Sorry I did not blog last night!! I know everyone keeps saying they check the same time every night...so I wanted to be less predictable and throw you all off! (Aka...I passed out in the chair) Now I have even more things to share between yesterday and this morning.

Yesterday was a rough day for Carl. Found out that because of the medicine that he is on his blood sugar has sky rocketed. When they were trying to draw blood his Picc line in his arm was not working for them (Because of the sugar levels).  He was on an insulin drip all night long. He now is getting blood sugar medication and insulin in the morning and then at meals. This was a killer for Carl last night because for the first time in a while he was starving and kept wanting to eat, unfortunately he could not eat a ton with his sugar levels up so high.

He was complaining about his ear feeling like it was going to pop (Like driving through the mountains) and the fact he was peeing a TON and very thirsty. Well to find out it was all because of the sugar levels. So after they got him stabilized he started to feel better.

His Lumbar Puncture (Spinal Tap) and Bone Marrow test was moved to tomorrow...during the bone marrow they will be testing for remission already! Today is a chemo day again, he is getting the red stuff, takes about 30 minutes for that through an IV.

With his blood sugar levels being so low he was being tested every hour through the night. Tonight he is getting platelets 18 pack (This is 3 bags of it) starting at 8pm. Which means they will be in the room all night again checking on him and waking him up. So hopefully today is a day of sleeping!! There was not a lot of that last night, and there will not be a lot of that tonight either.

The Doctor was in at 5:30am this morning, trying to make her rounds before her 7:30 meetings. She told us because of his blood sugar levels not being 100% controlled yet we will probably not be going home this week.

Tomorrow is the official 2 weeks that we have been here...CAN NOT BELIEVE IT!!

Day 6 Boring=Good

Monday, January 23, 2012

This morning Dr. Liepman told us that Carls hemogloblin levels went up from the previous day, which is good news because he did not get more blood. His platelet level dropped which meant that he needed more of those today. The GREAT news that we got today is that if Carl continues to do well he might be able to come home at the end of the week!

Today was a good day for him again, no side effects to the chemo other than dry mouth and his increased need to pee :) He has not yet found anything to satisfy his thirst, which is making him a little frustrated.

Other than that we spent the day relaxing, we watched the movie Speed then ordered Jets for dinner... I swear he never is sick of pepperoni pizza!! We are planning on going to bed early tonight.

As soon as the Doctor is here tomorrow I am going to work for a short day. Bonnie is planning on spending the day with Carl. Hopefully he can get more rest tomorrow as Wednesday is going to be a very busy day!!

Day 5 (Chemotherapy Day)

Sunday, January 22, 2012

Doctor did not have any new news for us.... remember that boring is GOOD! Carl's blood counts are headed in the right directions and has not received any blood or platelet transfusions for two days now. This is good news... if he keeps it up we might be able to go home for a few days between treatments.

Today was a chemotherapy day, he did well! He took some anti-nausea medicine through IV then the chemo, the stuff today is suppose to be a little stronger than the red stuff... but so far he has not had any side effects.

This morning Carl was craving "Real juice" so we were able to walk down to the cafeteria before they started the treatment and he found some minute maid orange juice that really made his morning.

The chemo took 2 hours, as soon as that was done he was unhooked from the IV's again... He kept tasting coffee in his water or 7up that he was getting from the RN's and PCA's. Zelda, our night nurse, had a trick that she does so now she is his favorite... you can tell because she is the one he is the most sarcastic with as well... (she dishes just as much right back at him).

The aftermath of our friends and family coming to visit us is seen by looking at the counter in the room. Baked goods everywhere. Ironically we have had more attention by the nurses today than ever...not really, but we keep offering to share :) Bri (Carl's step sister- to be) sent us some homemade meatloaf which was our dinner tonight. YUM!

Carl and I were taking naps all day long... now I can't sleep but Carl has been in bed since 9  but waking often between the RN's checking on him and his night sweats still.  The last time he was awake he told me that I can only be "clicking" for 15 more minutes then its lights out... He is referring to me typing.

So I am turning it in for the night... We will see what tomorrow will bring...

P.S. Don't forget to order your shirts!!!!!

T Shirt Orders

Don't worry, this IS NOT my post for the night....

I have heard from a few people that they do not want to go through paypal to send money for donations for
t-shirt orders. If you want to still get a shirt... it is NOT TO LATE!!!!  Send me an email with the subject line being Tshirts...let me know what you want in what sizes and I can email you back with my address for you to send a check to.

Please don't miss out on your Tshirt. I am making the order tomorrow night (Monday), so get them in tonight and tomorrow.

kelleym.porter@gmail.com

Thank you to all
-Carl and Kelley

Family...(Day 4)

Saturday, January 21, 2012

After having a day filled with laughter and smiles it occurred to me that family is the best thing in the world. I could go on and on about the family that we have, but I know not everyone wants to read that much tonight... Now, when I say family, I don't mean only those who are blood related. I am referring to all of those who are here when we need them to be the most.

Today I knew was going to be a sad day for me. Bob and Dave drove from Manchester to our house in Allegan to pick up our horses and take them for a while to help me out with chores. It is a blessing that we have people willing to do this for us. It is also extremely helpful that I can spend more of my time and energy focused on Carl and ensuring that I am here for him, and his battle. But, I feel like my children were packed up and sent on their way. I know they are coming back and they are just going on a small vacation, and they are going to a wonderful place, but there were some tears falling from my eyes this afternoon!

Meanwhile, as I was clearing the tears from my eyes at our house, Carl was surrounded by happy thoughts at the hospital. He had so many people come out to support him. His dad was the first person out this morning. Shortly after that Pam and his step sister Justine came over. His Aunt Marlene, Aunt Sue, and Grandma Porter then strolled through the door. In the afternoon some people from his work stopped by...Herman, Sylvia, Erica, Wendy(and her daughter Bella), Martin (and his family). It was nice to see everyone. After the rush from work, Carl's other step sister Chealsea and her boyfriend Kyle came over along with his Aunt Kris, Aunt Cheryl and Uncle Kevin... Cory and Chad also were able to make it up here as well. (If you lost count that brings the finial head count to 23 counting Carl and I!) Phew.. That was a busy day!

Carl was able to stay off of the IV's for the majority of the day again so long as he drank plenty of fluids. The Dr. reminded him that boring was good, and told him that he can explore other floors around the building if he wanted to... including stepping outside for a quick second to enjoy the snow. (Carl is VERY sad that it keeps snowing when he is sick because he has not been able to enjoy this weather once this winter...)

I have always known we need family in our lives, but after hours laughing so hard that as I am sitting in the chair typing tonight, my abs HURT, I can not imagine things with out the great support system we have! We need family for many reasons; We need people who are there to look out for us all the time. We need people who will love us no matter what. We need people who will stand by our sides and back us up even when we make stupid decisions. You don't have to be blood related to be called family... Carl and I both have a HUGE family that are blood related, but if you listen to us talk about our friends its always someone that we say are like a grandparent to us, or a second mom/dad. Or that a friend is like a brother to us. We consider you all our family, and we are blessed with such a large caring group of people.

Thank you to all of our family who are there to support us. (including those who are not blood related, we love you just the same!)

Big Problems, or Big God? (Day 3)

Friday, January 20, 2012

If you ask Carl how he is sleeping in his new bed at night he will tell you "Like Crap, I am up every 1/2 hour to pee!" Well, maybe this is why the nurses agreed to let him be off his IV for the majority of the day today.

Dr. Liepman came in the morning to let us know that his white blood cell count went down (great news!), his red blood cell count went up (good news) and that his hemoglobin level is still at 9.4 (WONDERFUL NEWS!) His platelets were down so he needed more of those today...Carl will tell you that they look like boogers. (They kinda do....) Best news that Dr. Liepman told us this morning is that his spinal tap yesterday came back normal. This is indicating that there is NOT cancer in his spinal cord OR brain (BEST NEWS ALL DAY).

Carl will tell you that the one thing he is most tired of is all the pills that he needs to take... which explains why he was mad at me when I reminded the nurse that he needs to take benadryl before he gets platelets or he breaks out with a rash on his face and arms... Oh well, I guess he can be made at me ... it never lasts long before he is over it.

Carls heart rate has been lower today, but still in the good range, the two of us were able to go on a walk around the floor and sit and watch the plow man in the parking lot without Cory (the IV pole) tagging along... It was nice to be able to hold hands/ walk with his arm around my shoulders. Almost made me want to cry realizing how much I have missed that.

Snow is blowing in West Michigan and created some bad roads for visitors to travel on... So tomorrow is going to be a FULL house on the 4th floor!! Our Pastor and his wife made it out before the snow got to bad, it was really nice to see them both!!

Some wonderful people at my dads work (Carl's father in law) are helping us out with our horses. They are coming to pick them up tomorrow and take them back to one of their houses where they have horses of their own. Another person for his work made arrangements for hay to be delivered to where the horses will be staying, so that will be a cost we don't have to worry about. Another person offered to drive out and haul the horses, and another offered the trailer. I will post some thanks tomorrow, once I make sure I have the full list of all that are involved with taking care of them. (They are still for sale for anyone who is looking for some older horses, or know someone who is looking).

For those of you keeping track, today is Day 3 for the Chemotherapy ... still no side effects ... we both are happy for that. Carl's next scheduled treatment is for Day 5 (Sunday) and this one is suppose to a little stronger and has more side effects.

For now, we are resting and gaining strength so we can, hand in hand, fight this thing...and win!

Day 2 of Treatment (Uneventful)

Thursday Janurary 19, 2012

Today was a pretty uneventful day.
Kelley went into work today and Carl spent the day with his mom and sister. He did not have chemotherapy today but it counts as day two of the treatment. The doctor did not have new news for us this morning, but mentioned that if he does well with treatments he might be able to come home in about a week for a bit, then coming back for more treatments... We will learn more soon. I know that this is good news for him...because Carl would love to sleep in our bed at home.

Carl was able to get in a few naps today and ate two meals. His apatite is still small, but he IS eatting which is good. When I came home from work tonight I asked him if he walked today and he told me no... So of corse we went for a walk... we walked the big block around the 4th floor, and flew through it. I asked him if he wanted to go around twice because of how fast he went around...he told me no, he just really didn't want to walk so he was going to try to get it over with faster. (at least he went for a walk!)

One week ago today is when we found out Carl has Cancer... in 7 days from today they will be testing to see if his cancer is in remission....I can not believe how fast it was before he got really sick, and long we have already been in the hospital.

Today was a reflecting day for me (Kelley) I was driving to work this morning thinking about how lucky I am and how much my husband is fighting right now and about all of the things that we will do when he is out of the hospital. Then of corse my good friend Martina McBride came onto the radio and made me cry... I loved this song before but it is even so meaningful to me now....

"When you're weak, I'll be strong
When you let go, I'll hold on
When you need to cry, I swear that I'll be there to dry your eyes
When you feel lost and scared to death,
Like you can't take one more step
Just take my hand, together we can do it
I'm gonna love you through it.

And when this road gets too long
I'll be the rock you lean on
Just take my hand, together we can do it
I'm gonna love you through it."

Day 1 (Chemotherapy)

Wednesday January 18, 2012

Today is Day 1 of Carls Chemotherapy. It was a rough day for Carl. We were up at 4am with a planned spinal tap scheduled at 8am. Carl got up, showered and was dressed to fight the day. However, Carl's platelets dropped (platelets are what is in his blood that allows him to form blood clots...this is also something that is expected to drop because of the leukemia). So they ordered a new pack of platelets and we were FINALLY on our way to get the Spinal Tap (OR Lumbar Puncture)... Carl likes to call this LP because it sounds less scary... By the time that they took him down stairs for the LP, his medication to calm his nerves was starting to ware off.  I was able to stay in the room with him while they explained what was going to be happening during the LP... I give credit to my husband, while he laid in the bed I was standing next to him, convinced that any moment I was going to have a heart attack listening to the Doctor explain the procedure.

Bonnie, Connie and I went back to the room and waited for him to come back after the procedure. When he came back he had to lay still for 30 minutes. He was able to lay in what ever position but the key was to remain still. Carl then took some antibiotics and then started his chemo through the IV today. He had a steroid that is suppose to help reduce nausea and increase appetite. This is a pill form and has a nasty taste in his mouth. He then had a bag of red liquid medicine which was the actual chemo, it took about 30 minutes for it to go into the IV and he is done until Day 4.

For the rest of the day Carl was in and out of naps. Falling asleep in folding chairs because of how bad he wanted to be out of his bed. He finally laid down for a while after dinner and took a nice long nap. I snuck away and went to the house for a few hours to do animal chores and a load of laundry, Bonnie came with me to help with the chores.

Bonnie and I brought back Wendys for dinner, but Carl did not have much of an appetite tonight for dinner. around 9pm we went for a walk around the block by the rooms and settled down and got ready for bed.

Pretty busy day for Carl, and started rather early and seemed to be one thing after another. As we are laying down tonight and I am typing about the day here, Carl is busy looking up fighting leukemia photos to make be his new background on his computer.

It is said that people show their true colors when there is something like this going on in ones life. Well I have to tell you this. I have an amazing husband who is so strong and such an inspiration to myself, and others around us. There has been tears in the room since we checked in, but the majority of the time there is laughter in the room. Happy spirits and memories being made, and relationships growing closer. Whether it is relationships with the staff on the floor, our family members or friends. This time has really brought many people together and has shown all of us about the great support system that we have.

I know this is going to be a long and rocky road ahead, but day one of chemo has come and gone, and we are ready to take on the next day.... one moment at a time....

Just like Carl's new background on his computer...

Kicking Leukemia's ass is PRICELESS!

T-Shirt... UPDATED INFORMATION

Hey everyone...I AM going to be ordering these T-shirts... They will be $15.00 a shirt (Add $2.00 for 2xl, 3xl, 4xl and $5.00 for shipping if you think yours will need to be shipped and NOT hand deliver)

Below is a T-Shirt Design that I made if you are interested in ordering this please visit the tab at the top of the page labeled T-Shirt Orders

WE HAVE CHILDREN'S SIZES TOO!!


For those of you who are NOT interested in a T-shirt, but would like to contribute financially to help pay medical bills please visit the tab at the top of the page that says donations.

The News...

Tuesday January 17, 2012

Yesterday was full of information. We found out that FOR SURE Carl has A.L.L. This is Acute Lymphoblastic Leukemia...this is a child's cancer. The adult version of this has a lower success rate...but that is OKAY because our doctor is going to treat this one as a child :) which has a GREAT success rate. Found out that these days pediatrics's consider someone to be a child until age 31. We will be attacking the cancer more aggressively with Carl than most doctors do with adults.

Our Doctor gave us some reading information...about the drugs they will be using and the Leukemia itself. What is really great is that the nurses on this floor are here for these kind of illness's and the ones that we have had are great about sitting down and explaining things to us, sharing some stories from other similar situations and really being there to comfort us. We have found that the night RN's are spending a little more time with us than the day ones, but that is mostly due to the fact that during the day we have friends and family here, and at night it is the two of us. We are starting to get our preferences about who we would rather have, but really have not met anyone who is a bad nurse, the staff here is great, and most of them are younger and easy for us to relate with.  

Carl and I went to bed early last night, we both were sleeping by 9pm because today is a busy day that starts EARLY! Yesterday was a good day for Carl, he is starting to get restless, he got out of the bed and sat in a chair in the room for a while, and was in and out of small naps. We also took some walks around the block here and spent some time sitting in the lounge area... It is a big seating area, lots of windows... and makes you forget that you are in a hospital.

Carl was a little jokester last night thinking that he was the new floor comedian.. it was great to hear him making jokes about the situation that is going on now.

The 1st joke from Carl about his Leukemia...
Connie (sitting in a char in the room): "Man... I feel like I have something in my eye" (Continues to rub eye)
Carl: " I feel like I have something in my blood"

We at first were not sure how to respond to this here joke... but decided that it is great that he is joking about things and having a great attitude about it all!

Later on he said that sometime during his vacation here he was going to hook up his X-box to the Big screen in the family room they have down the hall from our room...

I will say that the nurses are always laughing when they enter and leave the room and Carl is still his usual self, and being quick to grab a line to use on them all.

Last night I got a couch in the room that turns into a bed, I was excited to lay flat and sleep in something other than a chair, then we passed out watching a movie, so maybe I will try it out tomorrow. Carl has a new bed mattress on order it is one that is filled with air and SUPER comfy compared to the normal ones...or so they are telling us...that should be in the room today!

We have been up since 4am, Carl has already showered and they took some blood work for tests this morning. He has an 8am appointment to get a spinal tap, which means by 7:30am there will be people here to get him.

After the spinal tap is over he is going to start his chemo..

Hurry up and WAIT....

January 16, 2012
The labs that have the bone marrow tests that we are waiting on has not got back to the doctor yet... She called multiple times today to try to get the answers for us. This is the last thing that we are waiting on before we start fighting this.

Hemoglobin levels dropped again to a 7.5 so time for more units of blood... Getting two more tonight. I am happy he is getting the blood because it makes him feel so much better, however they have to watch him close during the transfusion, so tonight will not be a night that he sleeps well...

Visitors again today helped make time go by...
Grandma P
Aunt Marlene
Darin
Carl Sr.
Pam
Bonnie
Troy
Connie
...all helped the time go bye a little faster today. Carl was extremely tired today and was snoozing off and on through out the day with little cat naps.

Carl and I both are happy about the visitors we had today, always a blessing when we have family time. Thank you all for the love and support. I know we are both going to need this in the journey ahead...

Please keep your fingers crossed that tomorrow Dr.Liepman will have some more answers for us!

Good Day! (Family and Friends)

January 15, 2012

Carl and I woke up to the doctor coming to check in this morning. She came to tell us that his hemoglobin had increased to 8.4 WAHOO!! Today is going to be a good day! (goal is 13-17...Carl walked into the hospital with a 6.2 level, then before the first blood transfusion dipped down to 4.3 ... Scary, so the news of him breaking the 8 make was exciting news!)

Carl had lots of family with him today...
Father in-law (Darin)
Mother in-law (Cheryl)
Step-Father in-law (Danny)
Father (Carl sr.)
Step Mother (Pam)
Mother (Bonnie)
Future Step Father (Troy)
Aunt Cheryl
Uncle Kevin
Kaleb
Hayden
Aunt Kris
Grandma W
Grandpa W
Step-Sister (Chelsea)
Kyle

Had a wonderful visit with everyone, was able to walk around the block at our unit and ate a full meal for dinner. (First time all year). Sitting down with Carl tonight at talking about the day, he told me that today was a great day! If it was not for his spline hurting him today he would say he feels GREAT!

In fact, Carl had the best day of the year today health wise. It is so great to see how many people are part of our lives and to see the support system that we have. Not just with the people who come to see the two of us, but with the people who call us, comment on facebook, and have us in our prayers. I can honestly say we have people all over the US and parts of the world praying for health and recovery. We truely are blessed. We know that the road ahead will be long and hard, but we are ready and willing to move forward, hand in hand...ready to kick this thing in the butt!

(Tomorrow we should receive the last test that we have been waiting on.)