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Post by Presbyterian/St. Luke's Medical Center Denver.

My journey so far...

Jon's Journey

February 2013, before my second transplant

Let me introduce myself. My name is Jon (that's with no "h"). I am a 37 year old that was diagnosed with Acute Lymphoblastic Leukemia (ALL) on May 12, 2011. I had chemotherapy, radiation and a bone marrow transplant in both 2011 and then again in 2012-2013. On May 11, 2011 I went to the Medical Center of the Rockies Hospital in Loveland, CO to donate blood after being told at the 9news Health Fair that my Iron was high. While there the nurse told me that I had a pretty major blood problem and they couldn’t let me leave the hospital for liability reasons. They wanted me to go directly over to the ER. My wife and I spent the night at the hospital assuming that I had a bad case of the flu. That next morning, we were told by the doctor that I had a white blood cell count of 331,000. The average adult only has a count of 3,500 to 10,500 and a Leukemia patient has about 100,000. I knew it was bad.
They immediately transferred me to the ICU at Presbyterian Saint Luke's hospital in Denver, CO (about 60 miles away). They confirmed that I had Acute Lymphoblastic Leukemia (ALL) with Myeloid markers. I went to work that morning never thinking I would not return home. I spent a week in the ICU, and then after being transferred to a regular room I received several rounds of chemo and finally a transplant in August, 4 months later. Before I was diagnosed, my position with Group Publishing was outsourced to Long View Systems who gave me a temporary contract to find a new job but that contract ended the day that I was diagnosed. On top of this my wife, Laura, was 6 1/2 months pregnant. She had just graduated with a design degree from the University of Northern Colorado and was looking for a job in this awful job market. I was however grateful that Laura could spend those terrifying weeks and then months with me in the hospital and that we had the option of Cobra. Everything seem to fall in place, I was able to leave the hospital before the transplant and see the birth of my son, and we had so many friends and family gather to help us stay in our house and pay our mounting medical bills.

We had the best staff of both Doctors and nurses to get my health back and my mother-in-law stayed on the second floor of the hospital for hours so Laura, my wife, could visit me after the transplant. My brother and sister-in-law also allowed us to invade their house for almost 3 months to heal. The relapse... I had almost a year to get to know my son, spend time with my wife and enjoy everything around me when I was diagnosed again. My blood test in my routine checkup showed leuko-blast cells again. I happened to be in Missouri visiting my parents (I drove out there with Laura’s dad) when I was received the call from my doctor, so my parents drove me back to Colorado to check into St. Luke’s again. I said goodbye to my little guy, Hayden, for an unknown amount of time in Radiology while waiting for my pic-line. Nobody knows this but Laura and I were planning a thank you party for everyone who helped us along the way on my one-year anniversary of my transplant, August 19, 2012.

October 2012, a fever sent me to the ER

I guess I could say that we did not cancel it but rather postponed it until I receive yet another transplant. In the fall of 2012, after receiving another round of very strong Chemotherapy, I got Pneumonia and unfortunately had to go through several rounds of antibiotics and fluids in the ICU to get rid of it. I was then diagnosed with another virus and because this was ontop of my previous Pneumonia, I had to be intubated for 5 1/2 days to receive an extreme amount of steroids to allow my bleeding lungs to heal. Then after being extubated I received several weeks of physical therapy to walk again. I came home just before Christmas. I then went back into the hospital in January to receive my last round of Chemo before receiving radiation and a stem cell transplant on March 7, 2013. My second transplant was from a different donor, and I will forever be grateful to both of them. I stayed in the hospital for another 32 days before going to my brothers house for 3 months. I am now battling the lack of strength and also lack of immune system. I have also had some GVH (graft vs host) that attacked my skin, so I am not allowed out in the sun, but I am so grateful that I get to see my son, who I spent 260 days of his two years of life without seeing. I am patiently waiting for God to fulfill his plan, but it would be nice to get through this and get my life back. The hardest part about this is not just the financial hardship (cashing in my retirement and using all of our savings) but also not being able to see my little boy.

So our situation is unique to other cancer diagnosis, because I have no to little immune system. My son, who is 2, is not allowed be in day care or around other children because of my immune system and I am not allowed to change diapers. This puts us in a pickle. I also cannot do many things around the house to take care of myself (prepare food, clean, etc.). So my wife has to stay at home to take care of me. She is a freelance designer (with a degree from UNC), who picks up at home jobs when she finds them and also does a lot of creative bags, totes, aprons, blankets, www.foxridgedesigns.com. But we have an amazing amount of medical bills even with insurance. So, while we can pay some of our basic bills, we are getting buried in debt. We are really hoping to pay off a lot of these bills so that we can move on from this diagnosis. So we are asking you to not only buy our t-shirts and proudly wear this positive message but to also tell your friends and family! Because Life is STILL good, and always will be!! Thanks for listening. - Jon

November 2012, Happy to be going home after RSV virus and Pneumonia

My Second Transplant - Day +195

Welcome to the new Jons Fight website.  We have chosen to change it up and combine it all into one great place! Some of the new things on the website are:

• Blog
• Reaction check box, at the bottom of each blog so you can voice your opinion
• Comment section
• A suggestion button at the bottom of each blog so you can share it on your favorite sites
• My photography, some samples of my favorite photos (they will be on sale very soon)
• Staying healthy, we would love to pass on how we have kept me safe for over two years!
• Ways to help, we will have more fundraising opportunities to help us pay Jons medical expenses
• Monthly drawings to win great stuff
• An explanation of Leukemia for a better understanding of what Jon has
• A simple anonymous donate button

Getting better is sure a bumpy road!

I had a doctors appointment yesterday with Dr. McSweeney, and it seems like everything is going in a good direction.  But as many of you know there are always bumps in every road - I am just glad that my team of doctors at CBCI have found a way to make the trip as smooth as possible!

The bad news is that my immune system is not doing so well lately and having trouble staying where we would ideally like it to be to keep me safe.  I have dropped down to 320 (below 1000 is not very good) so for now I will not be socializing - or leaving the house.

The good news is that my bone marrow biopsy came back clear!! Yay! That means that the initial results show I do not have any leuko cells in there and that I am still 100% donor!! Whoot, Whoot!! So, my meds are keeping my immune system surpressed, which is not unusual and may do so for much longer - or the rest of my life (some people have had that happen).

CO 60 Trailer Park Flooded

As many of you already know, our little town of Milliken was put onto the map this week due to the flooding.  We did not have any issues at our house, thank goodness. But we did live on an island for almost 3 days! I would have preferred Hawaii or the Caribbean, but the mountain view will do! The streets seem to be opening up quicker than we thought! Thanks CDOT, and Weld County for the hard work they are doing and the great way they communicated with us throughout this whole storm. We did have a county road that was good/bad for a couple of days to use, but it was very weird to be cut off from everywhere.

Flooding in Milliken CO 60 and SH257

We have always had God, or an angel he sent down to us, sitting next to us this entire time and it happened again! I was in the middle of changing insurance, and because it is not always a smooth transition, no matter how far ahead you plan, CBCI helped me get an extra weeks worth of medication just in case.  Well, then we were stuck in our little town with no way of getting out, and I amazingly had enough medication (that I normally would not have had)!  Its incredible - how else can you explain it. The next week after receiving my additional meds we get stuck? There is no explanation other than GOD.

Laura has been really busy this week getting all of our photos, hard drives, etc. into a safe place and also packing all of our stuff so that we did not lose anything just in case and we could evacuate, which happened almost twice.

As you can see we have some great fundraisers going on...

You can vote for your favorite t-shirt design and in two weeks the winning t-shirt will be available at Custom Ink for sale! We will post a link here to buy it on October 1! Also, we have a pre-order sale for Jons 2013 Limited Edition photographic Christmas cards coming soon! They will be ready by November 1 for you to send out to all of your friends and family! And last but definitely not least, Laura is making clear bags in three sizes. And yes, they do follow the new regulations to bring into every stadium in the U.S. currently. They are available with orange, black, blue, crimson, and green handles! We will have pictures and ordering information available very soon! For more information on fundraisers and ways to help, please visit our ways to help page!

As always,
Life is still good, even with a few bumps in the road!
Jon

101 Ways I have kept Jon healthy and alive! - #1

101 ways I have kept Jon healthy and alive!

1. How to properly wash your grapes!

Wash the dirt off the grapes from the store.

Now place the grapes in the strainer.

Rinse the grapes for 15 seconds.

Now place the strainer in the bowl and soak.

After 15 seconds of soaking, rub them with your hands, drain and spin to get water off.

Ta Dah!! Nice clean grapes (safe enough for someone without an immune system).

What is Acute Lymphoblastic Leukemia (ALL)?

(source: www.cancer.org)

Acute lymphoblastic leukemia (ALL) is a fast-growing cancer of the white blood cells. Lymphocytes are a type of white blood cell that the body uses to fight infections. In ALL, the bone marrow makes lots of unformed cells called blasts that normally would develop into lymphocytes. However, the blasts are abnormal. They do not develop and cannot fight infections. The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needs.

Symptoms and diagnosis

(Source: www.bethematch.org)

There are about 4,000 new cases of ALL in the United States each year. It appears most often in children younger than age 10. ALL is the most common leukemia in children. However, it can appear in people of any age — about one-third of cases are adults. Acute lymphoblastic leukemia may also be called acute lymphocytic leukemia or acute lymphoid leukemia.

Signs and symptoms

The symptoms a person with ALL has depend on how many normal blood cells he or she has. Symptoms also depend on how many leukemia cells there are and where they collect in the body.

• Red blood cells carry oxygen throughout the body. Low numbers of red blood cells can lead to anemia -- feeling tired or weak, being short of breath and looking pale.
• White blood cells fight infections. Low numbers of white blood cells can lead to fever and frequent infections that are hard to treat.
• Platelets control bleeding. Low numbers of platelets can lead to cuts that heal slowly, easy bruising or bleeding and tiny red spots under the skin (petechiae).
• High numbers of leukemia cells can cause pain in the bones or joints, lack of appetite, headache or vomiting. These symptoms are less common.

Diagnosis

ALL is diagnosed when blood and bone marrow samples show a large number of abnormal lymphocyte blasts. To find out the type of ALL and how well it might respond to treatment, doctors test samples taken from the blood and bone marrow to learn:

• The size and number of leukemia cells.
• The type of lymphocyte affected — the leukemia cells can begin from one of two types of lymphocytes, B cells or T cells.
• What changes appear in the chromosomes of the leukemia cells. This is called cytogenetics.

Doctors also use a test called a lumbar puncture (or spinal tap) to find out whether there are leukemia cells in the fluid around the brain and spinal cord.

Based on these tests, doctors may categorize ALL into one of the following types:

• Early pre-B ALL
• Common ALL
• Pre-B-cell ALL
• Mature B-cell ALL (Burkitt leukemia)
• Pre-T-cell ALL
• Mature T-cell ALL

The type of ALL is one of several factors doctors use to plan treatment.

Treatment

(Source: www.bethematch.org)

ALL can get worse quickly, so doctors usually begin treatment right away. To plan the treatment, doctors look at a patient's risk factors (also called prognostic factors). Risk factors are patient and disease traits that clinical research studies have linked to better or poorer outcomes from treatment. Examples of risk factors are a patient's age and the type of ALL he or she has. For more details, see Risk Factors for Planning ALL Treatment.

For a patient with ALL, the treatment plan may include:

• Chemotherapy — drugs that destroy cancer cells or stop them from growing (discussed further below). Some form of chemotherapy will be part of the treatment plan for all patients with ALL.
• Radiation therapy — most patients do not receive radiation therapy. However, children who have signs of disease in the central nervous system (brain and spinal cord) or have a high risk of the disease spreading to this area may receive radiation therapy to the brain.
• Bone marrow or cord blood transplant (also called a BMT) — a transplant (discussed further below) offers some patients the best chance for a long-term remission of their disease. Because transplants can have serious risks, this treatment is used for patients who are less likely to reach a long-term remission with chemotherapy alone.

Chemotherapy for acute lymphoblastic leukemia

There are three phases of chemotherapy treatment for ALL: induction, consolidation and maintenance. Many patients also receive treatment called intrathecal chemotherapy to prevent leukemia from spreading to the central nervous system.

Induction chemotherapy

Most patients with ALL are given 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 achieves a remission in more than 95% of children and in about 75% to 89% of adults. [1, 2] Induction therapy is usually very intense and lasts about one month. After induction chemotherapy, the next step may be a transplant or consolidation chemotherapy, depending on the treatment plan.

Consolidation therapy

Consolidation therapy, the second phase of chemotherapy, is also intense. It lasts about four to eight months. The goal of consolidation therapy is to reduce the number of disease cells left in the body. The drugs and doses used during consolidation therapy depend on the patient's risk factors.

Maintenance therapy

If a patient stays in remission after induction and consolidation therapy, maintenance therapy begins. The goal is to destroy any disease cells that remain so that the leukemia is completely gone. Maintenance therapy is less intense than the other two phases. It may last two to three years.

Intrathecal chemotherapy

During all three phases of chemotherapy treatment, many patients receive extra chemotherapy to destroy leukemia cells that may have spread to the central nervous system (the brain and spinal cord). This chemotherapy is injected right into the spinal fluid using a lumbar puncture (spinal tap) or an Omaya reservoir (a device placed under the scalp). It is called intrathecal chemotherapy.

Transplant

(Source: www.cancer.org)

High-dose chemotherapy and stem cell transplant for acute lymphocytic leukemia

Standard doses of chemotherapy aren’t always able to cure acute lymphocytic leukemia (ALL). Even though higher doses of chemo drugs might be more effective, they are not given because they could severely damage the bone marrow, which is where new blood cells are formed. This could lead to life-threatening infections, bleeding, and other problems due to low blood cell counts.

A stem cell transplant (SCT) allows doctors to use higher doses of chemotherapy and, sometimes, radiation therapy. After these treatments are finished, the patient receives a transplant of blood-forming stem cells to restore the bone marrow.

Blood-forming stem cells used for a transplant are obtained either from the blood (for a peripheral blood stem cell transplant, or PBSCT) or from the bone marrow (for a bone marrow transplant, or BMT). Bone marrow transplants were more common in the past, but they have largely been replaced by PBSCT.

Types of transplants

There are 2 main types of stem cell transplants: allogeneic and autologous. They differ in the source of the blood-forming stem cells.

Allogeneic stem cell transplant

In an allogeneic transplant, the stem cells come from someone else. The donor’s tissue type (also known as the HLA type) needs to match the patient’s tissue type as closely as possible to help prevent the risk of major problems with the transplant. Usually this donor is a brother or sister if they have the same tissue type as the patient. If there are no siblings with a good match, the cells may come from an HLA-matched, unrelated donor – a stranger who has volunteered to donate their cells.

The stem cells for an allogeneic SCT are usually collected from a donor’s bone marrow or peripheral (circulating) blood on several occasions. In some cases, the source of the stem cells may be blood collected from an umbilical cord attached to the placenta after a baby is born (which is rich in stem cells). Regardless of the source, the stem cells are then frozen and stored until they are needed for the transplant.

An allogeneic stem cell transplant may be more effective than an autologous transplant because of the “graft versus leukemia” effect. When the donor immune cells are infused into the body, they may recognize any remaining leukemia cells as being foreign to them and will attack them. This effect doesn’t happen with autologous stem cell transplants.

An allogeneic transplant is the preferred type of transplant for ALL when it is available, but its use is limited because of the need for a matched donor. Its use is also limited by its side effects, which are often too severe for most people over 55 to 60 years old or for those who have other health problems.

Non-myeloablative transplant: Some people over the age of 55 might not be able to tolerate a standard allogeneic transplant that uses high doses of chemotherapy. However, they may be able to have a non-myeloablative transplant (also known as a mini-transplant or reduced-intensity transplant), where they receive lower doses of chemotherapy and radiation that do not completely destroy the cells in their bone marrow. Then they receive the allogeneic (donor) stem cells. These cells enter the body and establish a new immune system, which sees the leukemia cells as foreign and attacks them (a “graft-versus-leukemia” effect).

Doctors have learned that if they use smaller doses of certain chemotherapy drugs and lower doses of total body radiation, an allogeneic transplant can still sometimes work with much less toxicity. In fact, some patients can receive a non-myeloablative transplant as an outpatient. The major complication is graft-versus-host disease (discussed in detail later in this section).

This is not a standard treatment for ALL, and is being studied to determine how useful it may be.

Autologous stem cell transplant

In an autologous transplant, a patient’s own stem cells are removed from his or her bone marrow or peripheral blood. A process called purging may be done in the lab to try to remove leukemia cells in the samples. The stem cells are then frozen and stored while the person gets treatment (high-dose chemotherapy and/or radiation). The patient then receives the stem cells after treatment.

Autologous transplants are sometimes used for people with ALL who are in remission after initial treatment. Some doctors feel that it is better than standard consolidation chemotherapy (see “Typical treatment of acute lymphocytic leukemia”), but not all doctors agree with this.

One problem with autologous transplants is that it is hard to separate normal stem cells from leukemia cells in the bone marrow or blood samples. Even after purging, there is the risk of returning some leukemia cells with the stem cell transplant.

The transplant procedure

The patient getting the stem cell transplant may be admitted to the stem cell transplant unit of the hospital or receive treatment as an outpatient depending on a number of factors.

If treated as an inpatient, the patient is usually admitted to the hospital on the day before the high-dose chemo begins. He or she will usually stay in the hospital until after the chemo and the stem cells have been given, and until the stem cells have started making new blood cells again (see below).

If this is done as an outpatient procedure, patients and their families must be able to spot complications requiring their doctor’s attention. Unless they live close to the transplant center, they will be asked to stay in a nearby hotel.

The patient receives high-dose chemotherapy and sometimes also radiation treatment to the entire body. (Radiation shields are used to protect the lungs, heart, and kidneys from damage during radiation therapy.)

The treatments are meant to destroy any cancer cells in the body. They also kill the normal cells of the bone marrow and the immune system. After these treatments, the frozen stem cells are thawed and given as a blood transfusion. The stem cells settle into the patient’s bone marrow over the next several days and start to grow and make new blood cells.

In an allogeneic SCT, the person getting the transplant may be given drugs to keep the new immune system from attacking the body (known as graft-versus-host disease). For the next few weeks the patient will probably have very low blood cell counts, so they will be given supportive therapies, as needed. This might include antibiotics, red blood cell or platelet transfusions, other medicines, and help with nutrition.

Usually within a couple of weeks after the stem cells have been infused, they begin making new white blood cells. This is later followed by new platelet production and new red blood cell production.

Because of the high risk of serious infections right after treatment, patients usually stay in the hospital in protective isolation (guarding against exposure to germs) until a measure of their white blood cell count – the absolute neutrophil count (ANC) – rises above 500. They may be able to leave the hospital when their ANC is near 1,000.

The patient is then seen in an outpatient transplant clinic almost every day for several weeks. Because platelet counts take longer to return to a safe level, patients may get platelet transfusions as an outpatient. Patients may make regular visits to the outpatient clinic for about 6 months, after which time their care may be continued by their regular doctors.

Practical points

Bone marrow or peripheral blood SCT is a complex treatment that can cause life-threatening side effects. If the doctors think a patient may benefit from a transplant, it should be done at a hospital where the staff has experience with the procedure and with managing the recovery phase. Some bone marrow transplant programs may not have experience in certain types of transplants, especially transplants from unrelated or mismatched donors.

SCT is very expensive (often costing well over $100,000) and often means a lengthy hospital stay. Because some insurance companies may view it as an experimental treatment, they may not pay for the procedure. Even if the transplant is covered by your insurance, your co-pays or other costs could easily amount to tens of thousands of dollars. It is important to find out what your insurer will cover before deciding on a transplant to get an idea of what you might have to pay.

Possible side effects

Side effects from SCT are generally divided into early and long-term effects.

Early or short-term effects: The early complications and side effects are basically the same as those caused by any other type of high-dose chemotherapy (see the section about chemotherapy), and can be severe. They are due to damage to the bone marrow and other quickly dividing tissues of the body and can include:

• Low blood cell counts (with fatigue and an increased risk of infection and bleeding)
• Nausea and vomiting
• Loss of appetite
• Mouth sores
• Diarrhea
• Hair loss

One of the most common and serious short-term effects is the increased risk for infection. Antibiotics are often given to try to prevent infections. Other side effects, like low red blood cell and platelet counts, may require blood product transfusions or other treatments.

A rare but serious side effect of stem cell transplant is called veno-occlusive disease of the liver (VOD), also known as sinusoidal obstruction syndrome. In this disease, the high doses of chemo given for the transplant damage the liver. Symptoms include weight gain (from fluid retention), liver enlargement, and jaundice (yellowing of the skin and eyes). When severe, it can lead to liver failure, kidney failure, and even death.

Long-term side effects: Some complications and side effects can persist for a long time or might not occur until months or years after the transplant. These include:

• Graft-versus-host disease (GVHD), which can occur only in allogeneic (donor) transplants.
• Damage to the lungs, causing shortness of breath
• Damage to the ovaries in women, causing infertility and loss of menstrual periods
• Damage to the thyroid gland that causes problems with metabolism
• Cataracts (damage to the lens of the eye that can affect vision)
• Bone damage called aseptic necrosis ( the bone dies because of poor blood supply). If damage is severe, the patient will need to have part of the bone and the joint replaced.
• Development of another leukemia (or other type of cancer) several years later

Graft-versus-host disease is one of the most serious complications of allogeneic (donor) stem cell transplants. This happens when the donor immune system cells attack the patient’s normal cells and tissues.

The areas most often affected include the skin, liver, and digestive tract, but other areas may be affected as well. GVHD is often described as either acute or chronic, based on how soon after the transplant it begins. In severe cases, GVHD can be life-threatening. Drugs that weaken the immune system are given as a part of the transplant to try to prevent GVHD, although they may have their own side effects.

The most common symptoms of GVHD are severe skin rashes and severe diarrhea. If the liver is affected, the damage can lead to jaundice (yellowing of the skin and eyes) or even liver failure. GVHD can also cause lung damage, leading to problems breathing. The patient may feel weak, become tired easily, and have muscle aches.

On the positive side, graft-versus-host disease can lead to “graft-versus-leukemia” activity. Any leukemia cells remaining after the chemotherapy and radiation therapy may be killed by the donor immune cells.

Jons Fight with Leukemia

Barn

I love taking photos! Its my passion!

A barn in northern Colorado.

Jons Photography

My Second Transplant - Day +183

Hi All!
Jon here...
I have been watching all of you Like the post from Aug 28th. Although I am not feeling too much better ( I have still been sleeping a lot and still have some other issues) It really means a lot to be reminded that so many people care about me!
I also have a few updates. I had my 6 month bone marrow biopsy on Thursday. Preliminary results are not expected until Wednesday of next week, but we are praying that it will come back negative for Leukemia.

I was also able to get approved and signed up for Cover Colorado health insurance. This is a bridge to get me to November. As of November I will qualify for Medicare. This will be a blessing.

Lastly our medical costs have gone up, and our medical payment fund is running out of money. If you feel it in your heart that you should help, we could use some more help to get through until Laura can start working outside of the home again. (She is not able to work outside of the home right now because I am still not allowed to change diapers and Hayden is not allowed in daycare as he would be much more likely to getting sick and bringing something home to me. I also will not be able to work again until sometime next year.) We expect the doctors to take away this restriction early next year, but with new insurance and a new deductible, and much higher co-pays we are not not able to keep up. If you do wish to donate, there is a button at the top of the page that goes to the Paypal donation page. Thank you all for your Love and caring thoughts and prayers!

My Second Transplant Day +167

A sigh of relief today. Jon was really not feeling well last night and I had my parents on "keep your phones next to bed - call of baby duty - just in case", and this morning, after a long night of temperature checking, Jon is feeling great. It turns out that instead of a cold or flu, like we thought he may have had, he may have just had too much sun in the last couple of days that effected his gvh. We have had 90 degree days, and lots of outings with our little guy. This just added up and he began to not feel well.

We are still not absolutely sure that's what it was - but if he got over the flu or a cold in 12 hours then he's a mystery of science!

Oh wait, he has been told that he's a mystery of science already - okay well then maybe so! LOL. We are just very happy that he is feeling much better today!

Thanks for all of the prayers and good wishes!

My Second Transplant - Day +165

Hello everyone!  

Its a big day! I will tell you more about it later in this blog! 

We have been really busy the last month with all of the projects Laura is finishing up around the house while planning Haydens big number 2 and taking care of me! I need a nap just thinking about it - LOL!

On August 4th, Hayden turned 2! It is so crazy how big he is getting. For me, it seems like just yesterday that he was born. Last year Laura had a small 1st birthday party for him, but had planned to have a bigger party once I got out of the hospital and it ended up not happening because I was in the hospital so long. So as many of you can imagine Laura wanted to go BIG for this party!  And it was, a learning experience that is! This was our first kids party that we have ever thrown.

Just after his party, I found out that my counts were dropping. I was advised that I needed to be even more careful again. It also looked like I was getting a rash again. The last time it took a few months to get it to go away. This can be caused by too much time in the sun. The funny thing is that they treat this rash with UV light. Weird huh? At my next appointment, they said that it was not a GVHD rash. What a relief!!

My Second Transplant - Day+68

Hello everyone!  

It has been almost a month since I updated my blog. I am so sorry that it has been this long. I am still having tremors making it harder for me to type, but I am going to work hard to get through it.

As many of you know by reading the update that Laura posted on the jonsfight facebook page, Sunday (Mothers day) marked two years since I was diagnosed with Leukemia.

If you have not read some of the early blogs, they tell the story of when we first found out that I had Leukemia.  I have also added additional info to the bottom.

And as I always say, Remember, Life is still good, even with a few bumps in the road!

Thanks Sheila Short for taking our photos!

My Second Transplant - Day +40

Hello everyone!  

I am so sorry that it has taken me so long to update my blog. I have had issues with had tremors that make it hard to type. I still have them, so this is going to be a little shorter than some of my other blogs have been.

Today is discharge day for me! I get to go “home”! Well, Kinda home, I will be living with my brother’s family for the next couple of months while I recover from the second transplant. My doctors require that I stay within 30 minutes of the hospital in case of problems.

I am so excited, I get to see Hayden today!!!! The best part of it is that he has no clue! He will be so surprised! It has been 6 weeks and 5 days since I last got to see him (in person.) I can hardly wait!!!!! :)

I have been in the hospital longer this stay than any previous stay because of some graph vs host disease. (GVHD) This time I got this in my liver. This cause me to turn yellow. My skin and eyes were very yellow, and my skin itches really bad. (It’s hard to stop scratching.) Even though this sounds bad, it is actually really good. It means that my new bone marrow is fighting off the old, and that also means that I will be more likely to be able to fight off any leukemia if it were to return.

Speaking of the leukemia, I had a bone marrow biopsy about a week ago. The results are in, and they saw no signs of leukemia! They also have told me that my bone marrow is showing 100% new donor. This is great, and it means that my body is doing what it should to make the adjustments to the new immune system.

I have been told that I am extremely rare. Well, many of you would say that too... :) But the doctors are saying this because of my unique blood type transition. I am one of very few people that will have had 3 different blood types. Here is how it has progressed. I was born with type O+ blood. Then for my first transplant, the donor had A+ blood. Now, for the second transplant, my donor has B+ blood. So my blood type has changed from O+ -> A+, and will be transitioning to B+ in the next few months. Because of these transitions, I am only allowed to receive O Blood. I also am required to wear a medical bracelet stating such in case I have to receive emergency medical care, and can’t communicate this directly to the doctors and nurses.

And as I always say, Remember, Life is still good, even with a few bumps in the road!

Getting ready to go “Home” (I will be staying with my brothers family for the next couple of months because my doctors require me to be within 30 minutes of the hospital.)

My Second Transplant - Day +6

Hello everyone!  

As many of you have heard, Jon had a second Bone Marrow Transplant from a non-related international donor (different from the first one) on Thursday, March 7.

Since I do not have access to Jon’s blog all of the time, I have been updating his facebook page - www.facebook.com/jonsfight. (If you “like” the page the updates will show up for you on your page).

He is doing okay.  He has had a lot of nausea and vomiting since the transplant because of his meds that are needed - but for the most part he is pushing through and staying positive.

I will create a longer update on his facebook page tonight since I have to go for now.

Thank you to everyone for their well wishes through this!  We really appreciate it. Jon is more than happy to hear from you on his email, noh@mac.com.

I will keep you updated (promise) and let you all know how the transplant is going.

And as Jon always says, Remember, Life is still good, even with a few bumps in the road!

-Laura

My Second Transplant Day 208

We had to take Hayden to Sprague Lake in Rocky Mountain National Park to introduce him to snow! This is a special place, I asked Laura to marry me here! (PS - she said “yes”).

Hello everyone!  

What a couple of weeks!  I got to meet my secondary Oncologist (Kaiser) who was very nice, knowledgeable and patient with our hyper Hayden.   All of the things that you need in an Oncologist!  I think he is going to be a nice addition to my family of doctors and nurses who are going to save my life!

My transplant team has been hard at work to coordinate a second transplant for me. They did find a bone marrow match for me.  Its a 25-year old from Europe. I am so grateful that he is generous enough to help out someone he has never met. Unfortunately I have come down with the rhinovirus (cold) so the transplant that was scheduled for tomorrow has been post-poned for a couple of weeks. I also have a sinus infection, so let’s pray that I can get strong enough very soon for the next transplant.

The good news is that I get to spend Valentines Day with Laura and Hayden!  Yay!

This past week I have been through a battery of tests to make sure its safe, including another bone marrow biopsy, another intrathecal (chemo in the spine) as a precautionary method, and checking every organ including kidney, bladder, liver, lungs, and heart to make sure we are good to go. Everything turned out good except for my lungs’ ability to transfer oxygen to my blood. They think that this was a result of the lung problems that I had back in November, and they don’t know if they will get back to normal or not. But they are telling me that I am breathing at 100%.

I am not looking forward to going back into the hospital, but I know its what I need to do.  As many of you have already heard, my bone marrow biopsy and interthecal came back negative for any Leukemia cells!!  Yay!  So I will be going into the transplant in remission!  This gives me not only a fighting chance to beat this, but also an easier time during the pre-transplant process.  I will have only a minor dose of chemo and radiation this time, allowing my body to accept the new cells without knocking me down too bad. I may only have to stay in the hospital for a couple of weeks this time, as long as the CMV virus does not come back. 

There are a lot of unknowns - as usual, but we are staying positive and we are going to get through this one too. Why am I having another transplant if I am in remission? Because I have an aggressive form of Leukemia that could possibly come back if we do not hit it again. As many of you are probably noticing, my team of doctors and nurses like to keep me ahead of the ball instead of waiting for it to hit me in the back of the head! Which is funny because most of the time I do feel like I am running, running, running.

I want to thank Sheila Short for taking photos of Laura, Hayden and I (Sheila Short Photography).  We really do appreciate your patience with our curious little guy!

Thank you also to everyone who reads my blog. I know that I have not met many of you, but I can feel your support. It is great to get all of your cards and messages. We unfortunately have no way of adding a comment section to this blog, so that is why we created the facebook page, www.facebook.com/jonsfight.  I am also more than happy to hear from you on my email, noh@mac.com.

I will keep you updated (promise) and let you all know when my next transplant is.

And remember, Life is still good, even with a few bumps in the road!

-Jon