Jodi's Adjustment to Home Life

Extra, Extra read all about it:

Grant, Kellen and Lennox make Dodo's day!! Thank you Stephanie and boys! 


Also, a big shout out to Staci my sister who sent a great personal write up on how to feed and what to feed a patient who has no appetite and does not want to eat. This was amazing and truly helped in getting Jodi to eat and getting her well nourished.  Thank you!

As you know Jodi has been out of the hospital for almost one week now. Tomorrow will be her "one week home" celebration. She has been doing well but it has been an adjustment for her and her body as she has gone from the hospital environment to the home environment.

Most patients with prolonged hospital stays and intensive treatments will spend the first couple of weeks or even longer just sleeping when they get out of the hospital. They often become dehydrated because they no longer have an IV and they will also have some form of body aches and pains as they have been on IV medications in the hospital around the clock and in the home environment they no longer have IV access and will take medications by mouth rather than IV formulations. Needless to say their body has to make adjustments to the home environment. 

Jodi has done well and with Ed's help and constant presence Jodi has been able to dodge many of the standard pitfalls of the post hospital "yuck". Jodi has been fatigued but has had limited nausea, minor pain and no significant misery. We have been pleased with these results and more importantly she has avoided any infections and has not fallen and broken any bones. Falls and infections are two common disasters that occur in recovering patients that can have devastating outcomes.

All of the precautions to avoid infections and falls have been put in place and Ed has been diligent in doing his job to keep Jodi safe from these complications and he remains on guard.  This first week has been a great week when compared with the normal progression a patient goes through as they transition from the hospital to home. However Jodi has still had her share of reminders that her body has been at war with cancer.

Her first night home was an emotional, wonderful as well as a difficult night for Jodi. As her body adjusted she was overwhelmed with fatigue and exhaustion. She had a tough time “getting comfortable” which made it difficult to sleep. She has very little recollection of that first night, which is a great thing the body and mind do to help the patient get through the tougher times. It just becomes a blur which turns out to be a blessing because if she could recall the tougher times with great detail she would be anxious about any possibility of experiencing that level of discomfort again.  In her case she has been able to really avoid the typical prolonged discomfort that often is experienced.

Jodi has been alert and feeling “good” this week. She has been able to get up and walk around, spend time with all of us talking and watching some TV. Ed has continued to read to her and she has been remarkably doing well. She has been plagued with exhaustion, fatigue and no appetite but much less than expected. She has put up with us keeping her fed and hydrated even though the thought of any food seems unbearable to her at this point. Each night she has been able to stay up a little later as we attempt to get her back to her pre hospital schedule. Last night was a late night as she was able to stay up until 9:00pm.  They had her pretty well out between 7:00 – 8:00 pm while in the hospital and would wake her up throughout the night and early morning for various tests and exams.

She is still not into reading her emails herself or getting on the computer as these activities tend to make her more fatigued, nauseous or uncomfortable. She also has not done much talking on the phone. However she loves the phone calls, letters, emails and good vibes and prayers from everyone. Ed will read letters  and emails to her and she loves looking at the pictures and letters from the grandchildren!

Grant, Kellen and Lennox are the superstars with there great drawings and letters (numbers), these things keep Jodi going. 

It has been a true blessing in our home to see the love and respect that Ed and Jodi have for each other and to be surrounded by the wisdom and knowledge that comes from 49 years of marriage and years of serving each other and all those around them. They truly are absolutely “in love” and really still like each other. This love and service has been a great influence and a welcomed example in our home. We are lucky to have them here and share this part of their life and have them as part of our life. 


Ivy, Mazzy, Matia and I have been rewarded to have Ed and Jodi here for family prayers and scriptures and family home evening and all of the other day to day aspects or our lives that have been blessed by having Ed’s and Jodi’s example, knowledge and influence here in our home.  I love hearing Mazzy and Ivy yell out “Dodo and Papa, it’s time for scriptures and prayers!” as we gather at Dodo and Papa’s entrance to their bedroom to say goodnight and read and have family prayer.  Priceless.

“Thank you everyone for all of your support and love!” ~ Jodi

The Details of recovery

Jodi's WBC count continued to rise throughout the week until she finally was in the normal range. The doctors kept her a couple extra days to keep an eye on her "low-grade" fever. On Saturday 07/09/11 her doctors were happy with her labs and declared her safe to go home. The Stem Cell Transplant graft successfully grafted into Jodi's body and gave life to new fresh and clean bone marrow.


Now what?

Home for now remains here in Chicago as she will require more treatments as part of the protocol of her overall treatment. If all goes as planned she will continue to be followed and treated by her doctors here for the next few months and complete all of the post transplant treatment. At that time she will most likely transition her care to doctors in Colorado where she will simply receive occasional check ups, imaging, lab work done to monitor her remission.

The next 30 days will continue to be tough for Jodi as she is extremely fatigued and just feels "blah". This is normal and she will get a little bit stronger each day, 2 steps forward, 1 step back. She will need to remain careful with the food she eats and contact with people and bacteria, viruses etc. Ed is serving as her guard and watching over her to assist and make sure she is well cared for. He constantly updates me with vital signs, symptoms and questions. He has been great. He keeps her as comfortable as possible.

She will continue to see her doctors here 2 - 3 times a week and has her first clinic appointment since before she was hospitalized tomorrow.

Her sprits are good, she has done miraculously well! She definitely feels like she has been run over at times but is so thankful for all of her blessings, family and friends.

Jodi is home! 07/09/11

Rejoice, rejoice Jodi is home where she belongs. She came home Saturday 07/09/11 at around 5:00 pm. She walked herself into the house and up to her bed.

She looks adorable and is glowing in spirit and health. We rejoice her homecoming. She has a way to go for full recovery but is well on her way.


More details to follow....

Happy 49th Anniversary and an update

First of all, Happy Anniversary to Jodi and Ed!!  49 years and they are still smiling. Unfortunately, Ed could not bring flowers to Jodi because she can’t have plants in her room given they could carry a parasite or some other pathogen. It is a good day, a very good day.

Jodi is on the mend and is days  being released from the hospital. Her WBC count is within normal ranges and she is rebounding quite well on all fronts.

Jodi would most likely already be home, however she continues to have an occasional low-grade fever most likely secondary to other issues than fever. In Jodi's case, these low-grade fevers do not appear to be related to an infection but rather they are noted after the daily injection of a neupogen (medication that stimulates growth of hematopoietic stem cells).  Sometimes patients can get a low-grade fever as a result of this medication.  However the doctors want to make sure that this low-grade fever is not, the beginnings of an infection.

If Jodi can go “fever free” for 24 – 48 hours she should be released. In the meantime Ed continues to stay at her side throughout the entire day as her support, best friend and confidant.  It is great to see them together and fighting this thing.

At this point Jodi is stir crazy and wants to get released and who can blame her. She has been “the greatest, nicest, kindest, optimistic patient on the unit” according to the charge nurse.  Every person who has worked on Jodi’s case has sought me out to tell me how wonderful she is and how loving and supportive Ed has been.

We of course already know this about Ed and Jodi but it has been great to see the impact they have had on the entire Stem Cell unit, the staff and other patients have felt the light of Christ through the Jodi and Ed’s example. Ed and Jodi know the names of the doctors,  pharmacists, nurses, nurse assistants,  janitors, and they go out of their way to speak with them and show interest in their individual lives. One of the janitors (environmental services) told me after I left Jodi’s room today that in all her years working at the hospital she has never had a patient ask her name, get to know her, and take genuine interest in her as a human. She was actually a little choked up as she told me about her interactions with Ed and Jodi.

Jodi is well and healing nicely. I will keep this blog up to date to keep everyone informed on her status.  Thank you, thank you and thank you. Everyone’s’ collective prayers, thoughts and support has been felt and a tremendous comfort to Jodi, Ed and our family. Thank you

Jodi's WBC count starts to climb!!

Happy 4th of July. Yesterday was a good day and today even better. Jodi has been tired and fatigued. Each morning the doctors wait to see if her white cell count (WBC) has risen. Finally yesterday after multiple days of 0.1 and even 0.0 for her WBC count Jodi's body responded and it appears her stem cell transplant / graft has taken!

Her WBC count was 0.5 yesterday and today she was up over 1.0 which is a fantastic sign that her new bone marrow is starting to work and make healthy WBC's! She should continue to see her WBC count continue to rise until she is in the 5.0 + range (normal).

Happy independence day!

Progress Note Friday July 1st, 2011

Jodi is finishing up week 2 in the hospital. It was a great first week, but there have been some tougher days during this 2nd week. She and Ed and our entire family are grateful for all the blessings and loving care she has received from the doctors and staff on the Stem Cell Unit. 

Monday and Tuesday of last week she received her high dose chemo as discussed and did not have too many ill effects. She had some fatigue and tiredness but no expressed increase in fatigue. She did not experience any bone pain or much nausea and no vomiting. Then on Wednesday 6/22 she had her infusion of autologous stem cells (her transplant) as discussed in the previous posting.

Her first week went well and her 2^nd week has been good; however, she is finally starting to feel some of the negative side effects which are the results of both the cancer and the medications.

Tuesday of this week, 6/28, she awoke in the morning with a “sore throat” which was actually the beginning of her mouth sores  and other related symptoms. She has had some rough days this week but has continued to respond to the treatment as expected and in a positive way -- in fact, better than expected.   The side effects are not particularly dangerous or unexpected with her treatment, but they are uncomfortable.

I will explain: There are 3 real side effects from the high-dose chemotherapy Jodi received as preparation for her transplant. The major side effects are Stomatitis, Esophagitis, Mucositis.

·      Stomatitis refers to inflammation in the mouth

·      Esophagitis refers to inflammation of esophagus.

·      Mucositis refers to all mucous linings.

These are all caused by the same thing: the high dose chemotherapy which was given to rid Jodi’s body of all remaining cancerous cells prior to introducing here stem cell transplant. The medication works by attacking rapidly dividing cells which is exactly what cancerous cells are doing. The chemo is designed to target only rapidly dividing cells, so in theory, it attacks only the cancerous cells.

This is great, right? For the most part yes! The only problem is that we have several areas in our body where health cells divide rapidly.  For example any mucous membrane has rapidly dividing cells as a normal function of these linings. Our mouth, esophagus and intestines are all lined with a membrane of rapidly dividing cells. This allows these areas to rapidly turn over cells, heal quickly and provide a great layer to exchange nutrients and absorb things our body needs as well as rid the body of waste products and keep our body’s healthy.

Normally these cells rapidly divide without any issue, and we are unaware of the cells going about their jobs keeping us alive and healthy. However when high-dose chemotherapy is introduced, it targets all rapidly dividing cells including these normal mucosal cells. Many patients will have extreme side effects that can actually indirectly cause further complications making for a miserable patient and poor outcomes.

Fortunately Jodi has not had these extreme side effects; however, she has had some rough days including what was expected as discussed above. She has had painful mouth sores,  diarrhea, and general discomfort. She also has continued weakness and fatigue (which she has had since the time of diagnosis at varying degrees). It has been worse this week, and with the added pleasures of mouth sores and other symptoms, it has been a long week.

If you were to call Jodi or Ed or get the pleasure visit her, you would never known.  She is upbeat and always smiling. She has been a true champion throughout these tougher days.  Of course all the staff comment and express how much they enjoy and love Jodi. She has won all of them over and many have relayed to me that she is their favorite patient, but any of you who know Jodi would have predicted this. This is the Jodi we all know and love.

As far as her response to the treatments, everything is on point for a good outcome. She has responded well in everyway. Her old bone marrow is now gone and her transplanted stem cells are just now starting to generate new healthy bone marrow, so she is on her way to a full new and healthy bone marrow. Currently the doctors are waiting for the white blood cells WBC’s to flourish and go up in number. This can take some time but the labs are trending in the right direction.

Last, Ed and Jodi are grateful for all the prayers, kind thoughts, phone calls, emails, letters, love and support from those of you who love them most. Both have told me individually that they really do feel the support and love. Thank you and keep the good vibes flowing. It is much appreciated.