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 ;)