Monday, October 19, 2009

Monday,

Today is Day +10 following Bonnie’s transplant and the storm is coming on shore. The mouth sores (mucositus) started yesterday and is working its way down Bonnie’s throat. She is quite uncomfortable with pain and finds it extremely difficult to talk or swallow anything. The entire GI tract has fast producing cells, and when the white blood cell count is low, there are no new cells being created in the GI tract as part of the body’s way of functioning properly. The result is the painful sores that take over and can potentially span the entire GI tract.

To offset the pain, the clinic uses Morphine or Dilaudid, which Bonnie has been on since yesterday. The Dilaudid (stronger than Morphine) is great for the pain, but the most nauseating narcotic, so that adds to the complications. Ativan is used to counter the nausea, but has side effects similar to Valium.

Bonnie’s WBC counts are reaching the lowest point, along with her hemoglobin and platelets. The hemoglobin was low enough today requiring two transfusions of red blood cells. Low hemoglobin causes excessive fatigue.

Combining the Dilaudid, which in and of itself has fatigue/tiredness as a side effect, along with Ativan and low hemoglobin, creates a recipe for extreme sleepiness. It is difficult however for Bonnie to rest peacefully as the mucositis causes the salivary glands to secrete excess mucus which chokes her and wakes her.

Last night as well as tonight she has spiked a fever of 100.5 which triggers a standard protocol of a chest x-ray, blood cultures plus antibiotics, antiviral and antifungal medicines. The fever could mean infection, but it also could be from Neupogen injections or the beginning stages of engraftment. Because it is uncertain at this juncture, the doctors keep a close eye on Bonnie as she is most vulnerable for infection at this stage in the process due to her low blood cell count.

All said, this is very much the norm for a bone marrow transplant patient. We have seen similar things occur with our neighbor who received his transplant two days before Bonnie. Over the weekend he was very sick, yet already today the doctors see great improvement and indicated that he might be able to move to “outpatient” status by the end of the week. Every case is different, but Bonnie’s has tracked similarly to our neighbor, so there is some possible light at the end of this initial tunnel. Our neighbor’s spouse used the analogy of being at war on the battle field and crawling out of one fox hole of safety through the mine field to another fox hole of safety. It’s a necessary step in the process.

Nutrition is always a key factor and somewhat challenging when you can’t swallow, even with the pain medications. With the mucositis, it can cover the reflux area making it a challenge of knowing for sure that you are getting a supplement drink like Ensure down the right pipe, without filling your lungs. Picture trying to concentrate on getting a drink down the right pipe, while you experience intense pain and barely awake enough to know what you’re doing. That sums up in a nutshell what Bonnie has experienced today.

Sharing this is not meant for you to feel sorry for Bonnie, in fact if she were coherent enough she would probably not approve of the descriptive nature of this post. Those of you who know Bonnie well, know that it’s not like her to bring any attention to herself, but I (Steve) wanted you to have an accurate picture of what she is dealing with so you can know specifically how to pray for her at this point in the journey.

The new stem cells are working their way to the bone marrow cavity and hopefully will engraft soon, which means they will start to produce new blood cells. So in addition to praying for comfort in the midst of the storm, please pray that the donor stem cells will indeed engraft sooner than later and that the white blood cell count will begin to rise quickly which one of the benefits will be the healing of the mucositis.

Bonnie’s attitude continues to remain unwavering and in the middle of the mental and physical fog she still has determination. She realizes the importance of walking and moving about. Yesterday she still walked two miles and today she has gone about 1 ¼ miles holding onto my belt loop to steady herself. It would not surprise me for her to stir and wake later this evening and say that she wants to get the rest of her laps in to reach her goal of two miles. Thus far we have walked approximately 35 ¼ miles since she was admitted on October 2nd.

We face each day confidently knowing that so many are lifting our name up to God, who is so incredibly great and mighty, yet so incredibly personable. It is He who we draw our strength and perseverance from. Please pray that we will be faithful to Him in all things, including this challenge He has allowed us to endure and for the opportunity He has given each of us for spiritual growth. Thank you again for all your prayers.

Steve & Bonnie

3 comments:

  1. that sounds awful... we will definitely be praying!

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  2. We will definitely pray for the new bone marrow cells to engraft quickly. And for you as you care so diligently and lovingly for Bonnie.
    In Christ,
    Priscilla

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  3. Dear Steve and Bonnie,
    My name is Jean and I’m a volunteer with the National Bone Marrow Transplant Link. Our organization helps patients, caregivers, and families cope with the social and emotional challenges of transplant from diagnosis through survivorship by providing vital information and personalized support services. We subscribe to Google blog alerts, where we found your story.
    Please know that others are thinking of you and pulling for you! I would like to send you a copy of our award-winning Caregivers' Guide for BMT, if you send a mailing address to me at jeansjones@gmail.com.
    To learn more about nbmtLINK programs and services, please visit www.nbmtlink.org or call 800-546-5268.
    All the best!

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