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.

Margy's Counts Appear to be Trending Upward

Margy's blood counts are used as a marker of her recovery. After chemo, radiation, and transplant, the blood counts stay very low for awhile. The past two days her counts have been trending upward. Her white blood cells (WBC) are up to 170 today as are her neutrophils! This is wonderful news and we look forward to seeing this counts continue upward in the next several weeks. Today is day 24 post transplant. On day 30 we will check for whether or not the bone marrow has engrafted. Please keep your prayers going and your fingers crossed!

Margy Admitted for Fever

On Wednesday and Thursday, Margy was feeling a bit more run down with body aches and a headache. We were keeping a close eye on her temperature at home. In the early evening on Thursday, she had a temp of 100.6, so we called her doctors and they instructed us to come to the hospital immediately for admission and IV antibiotics.

Bone Marrow Transplant patients are extremely susceptible to infection, especially at this stage when they essentially have no immune system. So, any sign of possible infection needs immediate attention because it can be life threatening. A simple cold or sniffle for you or I could be detrimental to a transplant patient, which is why we have had to limit the number of people who come in contact with Margy and we are constantly disinfecting everything. Margy has to wear a mask every time she leaves the apartment in order to help protect her. Germs are the enemy!

Back to the story.....

Luckily, her fever broke on Thursday night and has not returned. They did blood and urine cultures, a CT scan of the chest to check for pneumonia, and they were considering a spinal tap to rule out meningitis. Luckily, Margy's fever and headache went away so quickly and she perked up so nicely by Friday morning that they deferred on performing the spinal tap. She continues to get IV antibiotics in the hospital, and the plan is for her to be discharged back to the apartment with IV antibiotics at least until her white blood cells are at an adequate level.

It was comforting to know ahead of time that virtually all transplant patients get a fever at some point and need to be admitted in order to check for infection. We continue to pray for engraftment of the donor marrow, and we are praying for no more fevers or hospital admissions!

Margy's Progress after Transplant

Margy continues to do well after the transplant. Certainly she is experiencing some side effects from her many medications, and from hour to hour, she may feel quite different. We are taking each day as it comes. She continues to be in good spirits, however, and all of your cards and support have been so helpful.

Margy had another plasmapharesis after the transplant because although the antibody level was still considered negative, it had increased slightly. They did this as more of a precautionary measure and to make sure the antibody levels remain as low as possible. They will check those levels again this week and once a week thereafter for several more weeks. The doctors at Johns Hopkins are very please with her progress so far.

Margy spends at least several hours every day at the clinic. Some days are longer if she needs blood, platelets, fluids or electrolyte replacement. Our main focus at this point is engraftment. What that means is that the donor marrow becomes the predominant marrow, producing white blood cells, red blood cells and platelets. On day 30 they will do a blood test to see if the donor marrow has engrafted.

We continue to watch closely for any signs of rejection. This remains a critical concern especially for the first year after the transplant. Margy will need to remain in Baltimore for at least 60 days after the transplant if all goes according to plan. So, if you could all please concentrate your thoughts and prayers on this goal of engraftment, we would greatly appreciate it.

Weekend of chemo over!

Margy had two long days of heavy dose chemo this past weekend in the hospital. She was in the hospital for 12+ hours each day. Fortunately this is the last scheduled chemo for mom's post transplant treatment. Going forward, Margy's days will hopefully usually be between two to four hours in the hospital with an occasional long day for some extra blood products or medication of some sort.

Today they found some more antibodies in Margy's blood. Although the levels may still qualify as normal, they are giving Margy plasmapharesis tomorrow. This means a longer day for mom. Margy has bravely endured these almost three years and now more recently with pre and post transplant. I am so proud of her and happy that her spirits have been well through this time. Due to the extended period of time for treatment, we have needed friends and other family to step in as caregivers and are so grateful for all their help. It is amazing who shows up to help in these moments of need.