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.

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.

Transplant Complete

The bone marrow was put into Margy's system today and fortunately she is back at the apartment resting. The marrow arrived earlier than expected. More details about today to come.

Transplant Happening Now!

Mom is receiving the bone marrow as this is being written! Please send your prayers, positive energy, and good thoughts her way in the next few hours. Bone marrow transplants can take anywhere between two to four hours depending on the volume of the "product" which depends on how concentrated the T-cells are from the donor. Thank you donor, whoever you are, for graciously offering my mom a chance at a cure. After three years of waiting, we are excited to receive this gift and begin the work of healing from this day onward.

Transplant Here We Come and Other News

In a couple of days Margy will get a bone marrow transplant. Thanks to the chemotherapy Margy has undergone in the last months, her cancer is back in remission and her blood counts are in the normal range. Margy is walking many days and getting her exercise. She has also been eating well prior to transplant. Margy is strong and we are all very positive that the transplant will be a success. The transplant will be administered in a similar way to a blood transfusion, so it is not actually a "surgery". The process of transplant is truly remarkable.

Vicky Kepler Didato, a former high school classmate of Margy's, learned about Margy's cancer when they reconnected recently through Facebook. Vicky, who lost both of her parents to cancer, sprung into action and decided that this year's high school reunion would be a good opportunity to raise awareness about bone marrow cancers. The class was such a wonderful support. Many classmates got on the Bone Marrow Registry and many others donated money towards helping Margy with the uncovered medical costs for her transplant. Margy and her family are overwhelmed by and grateful for this support from her high school class. An article was recently written in the Centre Daily Times covering this event.

Article About High School Reunion

Margy would like to thank everyone for their support throughout these almost three years. All of the cards, emails, contributions, phone calls, and thoughts have helped Margy along this difficult journey. Please keep them coming! The journey to wellness continues after transplant and your support will mean even more now than ever. Let's all send our positive thoughts to Margy on Wednesday. We love you, mom!

On the Road

It looks like we are on the road heading toward a transplant! Margy started inpatient chemotherapy last week because her blasts (a type of white blood cell) had increased because of the cancer. Her doctors decided it was necessary to have this intense chemotherapy in order for her to be able to get the bone marrow transplant. She will have to stay in the hospital for several weeks. Her sister Nancy is staying with her and is taking great care of her, keeping her company, and making meals when the hospital food does not appeal to her. We are not sure of the exact timing of the next steps at this point, however, we should know more in about 2 weeks. If you would like to send her a well-wishing note, feel free to send it through this website. If you would like to send her something in the mail, please contact us and we will provide you with her mailing address. All of your good thoughts and prayers are welcomed and appreciated.

Artist writes love song, sponsors Be The Match

Knut's Mom commissioned a song to be written for Meredith for her birthday (from Knut). The artist, David Rossiter (of the band Hoodang) offered to do this if anyone donated $100 to Be The Match (national bone marrow registry). Thank you 'Gitte and David Rossiter! We are so touched. Her are the lyrics:










MEREDITH (Knut's Song)

VERSE 1
She's small in stature
but big of heart
heals what's been broken
savin' lives is her art
If you're troubled, in need
She'll help you get through
Need a shoulder to lean on
She's got one of them, too

CHORUS
Meredith
what can I say
I love you tomorrow
same as today
Meredith
don't wake from your sleep
I know you've been dreamin'
dredging the deep

VERSE 2
Hair spun from gold
Eyes arctic blue
Fell hard for you darlin'
Guess you took to me, too
Now there's two real fine kids
Family all 'round
Feel like we're building something
Solid to the ground

CHORUS

VERSE 3
Now time is a thoroughbred
And she's knows how to run
You can feel her pace quicken
With each new day begun
Gonna savor each moment
With you by my side
You're my reason for breathin'
In your heart I abide

CHORUS

Still Waiting For A Match and Bone Marrow Donor Drive

A post almost a year ago indicated that potential donors had been identified. Unfortunately, however, for various reasons these donors did not work out. While it was also posted on several occasions that my daughters and my sister were half matches, it was also mentioned that I have antibodies to them. The doctors at Johns Hopkins have tried several methods to negate this antibody issue, but were unsuccessful in my case to do so. Thus, they are not able to be considered as donors for my transplant. As a result, we have still been waiting for a match to come through the National Bone Marrow registry, also called Be The Match.

My younger daughter, Meredith, is currently hosting a Bone Marrow Drive in Ann Arbor, Michigan. For more information, you can check out her team page at: http://www.bethematchfoundation.org/site/TR?px=1403490&fr_id=1440&pg=personal
Someone does not need to be in Ann Arbor to be part of the drive. You can go to this site and order a kit, which will be sent to you. The kit involves taking a cheek swab and returning the kit. There is no cost involved in obtaining the kit.

My older daughter, Aprille, is also working on organizing a Bone Marrow Drive in Boulder, Colorado. There will be more information coming on this drive.

I am not the only person looking for a life saving match. There are thousands of other people out there waiting for someone to be a match for them. It is our hope and prayers that more people join the registry every day so that matches can be found for all of us that are waiting. We live in a world where we often put off to tomorrow or the next day or the next month or whenever, what we could do today. But for someone waiting for a transplant, time is critical. So, if becoming a donor is something you are able and willing to do, we hope and pray you will take that step today to join the registry.

While I am the one waiting for the transplant, you may wonder why I use the term "we" so much in my posts. This is easy. This entire process of diagnosis, treatment, ups and downs with possible transplant dates, etc. has been more "doable" for me because of the continued love, prayers and support of my family, friends, business associates, and even strangers. For this, I offer my continued and very humble thanks. We continue to pray for a complete healing, however the Lord determines that to occur.