Phase One is DONE!

This is going to be a long post... you might want to grab a snack! :) 

Well Clinic yesterday was a bust. Reiss's counts were too low, so they cancelled all procedures. They think he is low because of a virus he contracted. Poor baby has sores all over in his mouth. We did find out that his bone marrow biopsy from last week came back negative. Meaning he has no leukemia cells in his bone marrow! This is great news, and just what doctors expected to see! This just means that he is tolerating the chemo and its doing its job putting the cancer into remission. He is finished with the first phase of treatment and now moves onto the second phase. 

Leukemia starts in the bone marrow so the percentage of leukemia cells is always higher in the bone marrow than in the blood.  When Reiss was admitted and diagnosed this is the percentage of his bone marrow/blood that were leukemia:

February 8- at diagnosis
Leukemia cells in Bone Marrow- 95%
Leukemia cells in blood- 67%

When Reiss was first diagnosed he was considered "low risk" because his white blood count was lower than they usually see with leukemia.

Eight days after diagnosis they want to see patients at 1.0% or lower. Here's the kicker.... Reiss was at 1.1% at eight days.  It is SO frustrating!  Because of that .1% they consider him "high risk" and it is so much more treatment. :(

He is now at 0.0% for bone marrow and blood! Which is great news!!!

There are a few main phases of treatment for ALL leukemia.

Reiss's treatment plan is called HR-ALL (High Risk Acute Lymphoblastic Leukemia)

The first phase is called induction.
1. Induction

Induction is the first phase of treatment. It consists of many chemotherapy medicines and usually lasts for about four weeks. Your child may need to be hospitalized for some or all of this phase.

• A bone marrow test is done at the end of the induction phase to determine if there are still leukemia cells visible under the microscope or not.
   
• The goal of this phase is to achieve remission. This means leukemia cells are no longer visible under the microscope when examining either the bone marrow or blood.
   
• Even when remission is achieved, leukemia is still present in the body, which is why further therapy is necessary.

Reiss just completed this first phase! His leukemia is in remission. 

The second phase is called consolidation- This is the phase Reiss is currently in.

2. Intensification or consolidation

Intensification or consolidation is continued treatment with chemotherapy to kill leukemia cells. This phase includes multiple chemotherapy drugs given in the hospital, in the clinic and at home. In addition to chemotherapy given by mouth, in the vein and in the muscle, there will be regularly scheduled times that lumbar punctures are performed to give chemotherapy into the spinal fluid. Some children may also receive radiation therapy to the brain during this phase. He will recieve more lumbar punctres.. than regular

Because Reiss is high risk, this phase for him will occur every week for 8 weeks (4 weeks for standard treatment), and he will get about 6 lumbar punctures (about 4 for standard treatment). He will be getting chemo through his port and also in his spinal fluid.  His ANC must be above 750 and his plasma must be above 75,000 to be able to receive treatment. 

The next phase is called Interim Maintenence

Reiss will receive treatment every other week for 8 weeks. He will need to stay in the hospital for 3-4 days after receiving Chemo. The hospital stay has its pros and cons. Some of the pros are that the symptoms and the side effects of the chemo are better controlled in the hospital. They can keep him more comfortable and monitor him more closely. 

The 4th phase is called Delayed Intensification this will last 8 weeks

The Final phase is called Maintenence

3. Maintenance or continuation

The goal of this stage is to eradicate all leukemia from the body.

• Usually, less intensive chemotherapy is used, much of which can be given at home.
• This phase can last months to several years.
• Your child will come to clinic regularly to see the doctors and nurses there during this stage

So that's the run down of what is going to be happening in the next few months. There will be bumps in the road, and changes might have to be made, but this is the plan for our little guy! 

How is Reiss doing?

Sadly Little Man hasn't walked in over a month. His little legs and hips just hurt too bad from the cancer and chemo. His body is so weak and he has lost so much of his muscle. Thankfully Amber has a lot of experience in physical therapy and knows what to do to help him.  He practiced rolling over and pushing himself into crawling position last night.  His arms are weak so he uses his head to push himself up! :) Today, he was able to do it on his own. I have no doubt he will regain his abilities quickly. Its just hard to see him learn how to do everything again for the first time. The good news is that he is wanting to start moving and walking! He'll get there! 

He is acting better and feeling better!! Yay! He wants to be outside and play. He wants to ride his bike and play with trucks, tractors and legos on the floor. Amber had him using his plasma car and he really enjoyed that! Some of the swelling from the steroid is starting to go down. Although he still tires quickly, he is showing interest in doing normal, fun things. GREAT NEWS!

A couple weeks ago the whole family was able to go to the movies. Kenny's sister and her husband, sanitized the balcony area of their family theatre and got it all ready for Reiss. Amber and Kenny were so grateful to be able to enjoy a family outing at the movies. Thank you Jamie and Josh for doing that! 

Amber is in awe at how amazing her family, friends, and community have been. There is so much good in this world! They have felt it first hand. So much love, so many donations, so many meals and phone calls and well wishes.  They are SO grateful. So very grateful for all of you and the love and support you have given them! They have been blessed by so many, even strangers. Thank you!

Reiss one year ago