Thursday, 29 Nov 18 was the worst day of my life! Just coming to grips with the severity of it all. I am really tired after a longest day, but I’ll try to give an update: (fell asleep on this msg.,-sorry). Finishing it up on Friday morning.

I took Theresa (TT) to our primary care doctor on Wednesday for a follow up visit after a routine early season illness. TT had complained to her Mom that although her cough & stuffiness had gone away, she still felt fatigued and a little short of breath at dance. The doctor, TT & I had a long conversation about sleep habits/hygiene (they call it), nutrition and the stresses in a 17-year old girl’s life. Dr Neethi Patel was fabulous and spent a lot of time listening and talking with us. She then suggested we turn our visit into a regular annual physical, so she could do a few tests and a blood work up. I had excused myself to the waiting room because I knew they would be talking about private topics. Dr Patel called me back into the hallway outside TTs exam room and told me that her Hemoglobin reading was 8.8 as opposed to a normal reading of ~12.8 for a young lady TTs age. She told me that result explained all the symptoms that we had talked; even the shortness of breath and stamina issues, which she had honed in on as the most concerning. She told me to put TT on an iron supplement and that she’d call us when the lab results came back. Dr Patel called Margie’s cell at 0715 this (Thursday) morning, while she was on her way back to our house from dropping TT off at the high school. She told Margie that all TTs tests results indicated Leukemia, but that she needed to get TT to the Beaumont Hospital in Royal Oak, MI (an area hospital with a specialized oncology center) to undergo more confirmation tests, tests to narrow down the specific type and variant of the disease.

Margie came in the door of our house falling apart to be greeted by our 13-year old that was getting ready for school. Maria finally got Margie to tell her what was wrong and she understandably started falling apart too. I had stayed after work (at a local grocery store) to do a little shopping for some iron rich foods for TT. I was just about home when Maria called me crying so hard I could barely understand her. I heard “Leukemia” and “you need to be home now”. Walking in my home and seeing the pain, despair and fear in my daughter and wife was a sickening experience.

Margie and I both went to pull TT out of school and inform her diagnosis. TT and Mom went off to the hospital. I got Maria to school (she wanted to go cause she had 2 tests). I was going to try to sleep a bit before picking up Maria and meeting Margie and TT at the hospital. I of course didn’t sleep, started the notification phone calls and reading about pediatric Leukemia. 

I called Margie after 1000 hrs and she informed me that TT has Acute Myeloid Leukemia (AML). It is the more aggressive of the two basic groupings of pediatric Leukemia (Acute Lymphoblastic Leukemia (ALL) is the other major grouping. Theresa is done with public school for the rest of her junior year, and she will not be able to continue dancing through June 2019; the end of the dance season.

Maria and I stopped to get food and took things for our girls to spend the night and found Dr Laura-Kate Gowans, TT’s primary oncologist talking to Margie and TT. The doctor was wonderful with us and spent at least an hour with us after we arrived educating our family about our journey to come. Doctors spent Thursday primarily testing to further specify within the AML grouping exactly what type/ variant TT has and determining an exact baseline of TTs current health status and the disease’s progression.

This morning (Friday) TT was to have a procedure to harvest marrow and cells from within her hip for further testing. We’re told she can come home sometime later today.

They are releasing her so we can take TT to see Dr Michael Mersol-Barg, a reproductive medicine expert tomorrow (Saturday) to see what can be done to preserve TTs fertility, because there is a strong possibility that the three rounds of chemo she will undergo could destroy her ovarian function. The chemo can’t start until the fertility issue is addressed one way or the other.

Once that is addressed TT will go back to the hospital (same room she is in now).We don't know exactly when for sure, but tentatively think that will be ~ 17 Dec 18. She will undergo very intense chemo for somewhere between 8-12 consecutive days (maybe once, maybe twice a day). Duration, frequency & exact cocktail of drugs will be tailored specially to T based on her test results. After the chemo she must remain in hospital for ~ 4 weeks to recover, for blood count testing and blood platelets infusions. The intent hospital stay is to keep her from getting infected since the process tears down the immune system. Dr Gowans assured us that at the appropriate time TT can have friends and family visit often as long as they are healthy.

We were told to prepare for 3 cycles of intense chemo followed by the prolonged hospital stays. Exact number of chemo days and the duration of her hospital stays afterward will vary based on TTs condition/progress. We believe/hope she will get a short reprieve (a matter of a few days) between each cycle (hopefully at home).

Only after she is in total remission will they see about giving her a bone marrow transplant to help her body rebuild her immune system fully. Maria will be tested for compatibility first (1 in 4 chance of a match). She would the best donor if she matches since she & TT are the only two people on the planet who share Margie & my DNA. If she is not a match they will test Margie and I. If necessary they will go to a national database to try to find a suitable unrelated donor. There are no familial statistical advantages of a match after her sister, Mom & Dad.

That was a lot to process in 12 hours to 24 hours. I am headed back to the hospital this morning and Margie will join us after briefly going to work. Theresa will undergo a marrow harvesting procedure this morning and then we will bring her home this (Friday) afternoon.

One event, one day at a time, striving for the wisdom and grace to accept all of this we can’t control (kinda hard for a type A, retired soldier & his strong-willed, Army pilot, veteran wife). I have struggled personally since I retired from, the Army, because civilian life rarely requires one to live for a cause bigger than self interest. I should have been more willing to chill, because my life (our family) changed dramatically yesterday and I don’t think I have any self interests anymore...

We are beginning to lay out a family care plan for moving forward. Margie currently plans to start her new Government civilian job ~ 10 Dec 18. She will probably sleep at the hospital a lot since it is only 15 or 20 minutes from work. I will spend time with TT during the day (often) and will transport Maria to her activities and to family time with her Mom and sister. We will reach out to Margie’s parents and extended family and friends when we need help or breaks of course.

First request, be patient with my babbling (short form Comms) texts, it actually helps to share. It will also serve as a check on how well I have understood all that is being thrown at us. I will try to keep you all updated.

We are scared and reeling, but we have seen so much competence, loving care and commitment in our first most terrible days of TTs cancer battle that we are heartened. Theresa’s primary care physician (Dr Patel), who listened so intently and knew what to look for and check, caught this early. The entire hospital staff, especially Dr Gowans  who we didn’t know existed less than 24 hours ago, and already feels like our trusted advisor and a person who can help us out of these turbulent waters. All the people we have encountered so far have been beyond description - simply the best!

Can’t end without asking for your prayers, we are firm believers in the power of prayer. We of course want our miracle, but we will humbly pray for God's grace and love as his will be done.

Doctors believe we have caught this early, TT is in good shape now, and we are all optimistic for a positive outcome!

We may at some point need to ID blood type matches to Ts B-neg. If this need arises we will reach out.

I am married to a truly phenomenal woman and have already seen character revealed in my 13-year old that I didn’t know existed. Our patient daughter (Theresa) is of course scared, but has held it together better than all of us. We are ready to meet this threat to our family together. I Love my family, so the fight begins!

With gratitude and love,
Michael E. O’Connor
Theresa's Dad