Yesterday, Mama Pham had a very bad reaction to the Intrathecal Chemotherapy (IT) done at St. Joseph’s Hospital by Dr. Joseph Tison. She had two rounds of IT done in the past at City of Hope with little issues. This time, she had a painful sensation at the bottom of her spine that caused her to have body spasm for about two hours. Dr. Tison by once she developed the reactions, but said he did not know the cause and stated he had never seen that kind of reaction in the patient. He was unfamiliar with the chemotherapy drug (Methotrexate) that he injected in her. My mom had a similar tingling sensation in the past, but it only lasted about 10 minutes. The nurses and I triaged the situation and concluded that it probably was just an irritated nerve. We hypothesized that the liquid that was injected irritated a nerve and caused the tingling. This meant that as the liquid slowly dispersed through the Central Nervous System, the tingling and irritation would go away. After about two hours, the tingling did indeed go away and my mom was completely fine. I do not know for sure if the irritated nerve was the actual issue, but the series of events seem to lead to that. I was very thankful for good, knowledgeable, experienced nurses that day!
The next intrathecal chemo will happen about 4 – 6 weeks from now. We will have it done at City of Hope for continuity and quality of care.
Today will be Mama Pham’s first big procedure at the local hospital. So far, she has had all treatment at City of Hope, her transplant hospital. Today, she will be getting a CNS Prophylaxis (Spinal Tap + Chemo) done at St. Joseph’s Hospital in Orange County. The travel to City of Hope (35 miles, about 1 hour drive) takes a toll on her so she will get some of her procedures done locally in at St. Joseph’s (7 miles, 15 minutes). The procedure is fairly quick, but requires 2 hours of stationary, lie flat recovery. We do not want any leakage of the spinal fluid into the body! The leakage can cause headaches and tingling sensations.
She needs a total of 6 preventative CNS Prophylaxes. 3 down, 3 more to go!
Mama Pham’s 100 Days Post-Transplant Biopsy came back clear! There are no Leukemia cells present. She is currently cancer-free!
She has dropped to 92lbs and is still taking about 12-14 meds per day, but we are definitely one huge leap closer to full remission. She is not considered to be in full remission until the 2 year mark. 110 Days Down. 630 Days to go!
We are currently at a stable state of 0.5mg Sirolimus and 1mg Tacrolimus. These are both immunosuppressant drugs. Their doses are adjusted twice a week, after the Complete Blood Count lab work reveals the chemical make-up of Mama Pham’s body. Too much of these drugs can compromise the health of the body’s organs as well as suppress the immune system too much, preventing it from fighting lingering cancer cells and other infections. Not enough immunosuppressants can increase the risk of Graft vs. Host Disease (GVHD). The goal is to have the perfect amount each day to suppress the immune system enough to prevent GVHD, but still keep the body healthy and strong with the ability to fight the bad guys.
Today is Day 102 post-transplant. Mama Pham went to City of Hope for a bone marrow biopsy and picc line removal. We get the results of the biopsy in a few days. With the removal of the picc line, she no longer has to worry about infection from external devices! Showering will also be much easier. One step closer to a normal life!
Today is Day 100 post-transplant for Mama Pham! Just in time for Mother’s Day. Day 100 is the day when a patient can reduce the amount of doctor visits and lab work from twice a week to once a week. They can also start seeing their local oncologists. I will greatly miss the care from Dr. Salhotra and the City of Hope team. However, I seeing a doctor closer to home will help with Mama Pham’s spirits. She will still go to see Dr. Salhotra once a month at City of Hope in Duarte, CA. Her weekly visits, however, will be locally with Dr. Mummaneni at St. Joseph’s in Orange County.
Hooray for Day 100! Her taste buds have not returned, she is still on a neutropenic diet and is still week, but is definitely in a much better state than Day 0!
Today is the annual City of Hope 2014 BMT/Hematopoietic Cell Transplantation Reunion. We cannot make it this year, but hopefully we can come to City of Hope to celebrate the success of even one more bone marrow transplant!