A New Path

After the results of the testing at the end of January showed leukemia was still present, the option of receiving treatment locally was not available. Margy was presented with a new option. This option offers two new medications which have been shown to have a positive effect on the leukemia and has put some patients in remission. Today marks the first day of this treatment, which she is receiving at Johns Hopkins. Please send her prayer wishes and good energy here! She remains positive and strong.

Cancer Returned - Margy Asks For Prayers

In November 2012, Margy was diagnosed with acute myeloid leukemia. Her diagnosis changed before her transplant from MDS to this leukemia and it has now returned. Since early December, Margaret received inpatient treatment in the form of intense high dose chemotherapy. Currently she is between treatments and is being monitored by her medical staff outpatient. In a little over a week she will return home. In early February Margy will receive injections of Vidaza from a local oncologist. These injections are intended to cure the cancer. She will receive this treatment seven days out of every twenty-eight days over the course of six months. We would like to extend a sincere and deep thanks to everyone who has supported mom and all of us through these four plus years. There are just so many people for whom we feel gratitude. After her transplant and recovery period in the last half of 2011, we let out an elephant-sized exhale and put all of this behind us for awhile. We took a break from it, as evidenced by lack of updates on the website. Thank you for your patience, understanding and continued support. Margy would really appreciate prayers, cards, and/or emails. You can contact her online here using this form. If you would like her address to mail her a card, please use the same contact form. This has been a long journey for Margaret. She is fiercely fighting this. I am in awe of her bravery and her daily efforts to maintain her health.

Remission - One Year After Transplant

In July 2012, we are happy to report that one year after transplant, Margy's immune system and marrow is 100% donor and cancer free! Thanks to the life saving contributions of a very kind donor, Margy has survived and has spent time with grandchildren, friends and family over the last year. Our deepest gratitude goes to this generous donor. Margy had the opportunity a month or so after her one year anniversary to contact her donor. This was a wonderful opportunity for which she was grateful.

Fungal Pneumonia

Margy had a fever again Thursday of last week. After some tests Margy was diagnosed with a fungal pneumonia. As mentioned in a previous post (Margy Admitted for Fever) , transplant patients are extremely susceptible to all kinds of conditions due to their low blood counts. A fever indicates an infection and so a fever can be a life-threatening concern with bone marrow transplant patients. This is why it is extremely important to sanitize surfaces in Margy's environment extremely often. Margy wears a mask everywhere except for the apartment where she lives.

Bone marrow is responsible for creating your blood cells, including your white cells. Since radiation and chemo and transplant, Margy's immune system is starting over again. Her immune system is like a baby's immune system. She will have to get immunized again for things she was already immunized for as a child: MMR, chicken pox, etc. Margy's doctors told her that as a result of her immature immune system, she will be sicker the next three years than she has been in her adult life as her system matures.

Margy continued to have a fever intermittently the next several days. Margy's doctors are treating the fungal pneumonia and hopefully she will be fully recovered from that soon.

Engraftment!!

We received news today that the engraftment test returned with great news -- 100% engraftment! That means the marrow is all donor marrow. The medical team will continue to monitor for graft versus host disease. Since engraftment happened in this percentage and this early, the likelihood of quicker recovery exists than it does for patients with less donor marrow. The path to recovery continues, but this is a huge accomplishment and the news for which we have been waiting!

More Days Off

Today is day 37 post transplant. Mom had two days off this week and has this weekend off. By "days off" I mean that she didn't have to go into the hospital at all - yay! Less medicines are needed now too, which is great.

We did not get the results of the bone marrow engraftment test today as we had hoped, but should find out Monday once mom returns to the hospital again.

We'll keep you posted...

Mom's Progress and Post Hurricane Update

Today is day 33. That means it has been 33 days since transplant. The last week plus has been a really exciting time to be here as I've watched mom's blood counts soar upward. The counts they watch for mostly are the white blood cell and neutrophil counts. The white blood cells have gone from less than 50 up to over 1500 today. Normal range for white blood cells is between 4,500 and 10,000. As is normal for patients, her blood counts did fluctuate around 1000 since about mid week last week.

As mom's counts have increased, her medications have decreased and therefore some of the side effects that can accompany taking so many medications. Still, the side effects do get her down sometimes. Cards and packages and emails do lift her spirits, so keep 'em coming! She checks everyday. Overall, mom is very lucky and doing well. She is progressing as her medical team expects.

On day 30 (Friday, August 19) they took a test to see if the donor's marrow has engrafted. We may not know these results until Friday. Mom's medical team suspects that the counts rising in the manner they have indicate that they are likely the donor's cells.

Another benefit of mom's counts rising is spending less time in IPOP (the outpatient clinic at the hospital). She visits IPOP every single day. When she is not in IPOP then she's back at the apartment nearby the hospital. Tomorrow is likely to be mom's first full day off from IPOP. This weekend mom was only in IPOP for 45 minutes. This is a record, since she usually must wait there to see what her blood results show in order to see if they need to give her any blood products or if they need to do anything else. This weekend mom didn't have to wait for her full results to come back (this can take 2 hours or more sometimes). There have been several days now in IPOP where she does not require any IV drips, so yet another thing to be happy about.

Regarding Hurricane Irene, we have been very lucky. Aside from some very heavy winds and a lot of rain Saturday night, Baltimore fared pretty well. Some parts of Baltimore do have power outages, but since we are close to the hospital, we have had no interruption in power. One remnant that remains from Hurricane Irene are wigs and hair pieces -- casualties of the wind -- that have found their new homes on sidewalks and bushes.