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.