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.

Jodi's life in the hospital

Jodi is on Hospital Day #3 today but Day 0 for her stem cell transplant. Let me explain:

A quick note about what kind of patient Jodi has been:

She has received excellent attention and care. Many of the staff on the stem cell unit have sent me emails, voicemails, calls etc and they all share the theme that she is their favorite patient and so pleasant and funny and an "amazing person". I knew that this would be the case and actually I am proud that she is at my place of work not only because it is a great hospital but also because I knew she would be a pleasure to treat as a patient and this bodes well for me in multiple ways. I will have less resistance when admitting to their unit from the ER and already many of the nurses and doctors who have interacted with her have already made my work easier. They genuinely like her and Ed and ask a ton of questions about both of them. It is beyond the level of just feeling sorry for me, which without a doubt has some effect but their level of interest and concern is far beyond the "I feel sorry for you" point. 

Thanks mom and dad for making me proud. Is so nice to have a pleasant and wonderful patient when you have a stressful shift and 80% of the patients are not that way. 

What is Jodi going through in the hospital and what is her treatment? 

Melphalan:

Monday and Tuesday she received a chemotherapy medication as preparation for her transplant. She had not received this medication in the past and this medication has a side effect list that is a mile long like many of the chemotherapy medications she has already been taking. The medication  is called Melphalan.

Melphalan is used to treat multiple myeloma, which as we have already discussed, is a cancer in the bone marrow .

Melphalan is an alkylating agent. Basically it works by interfering with the growth of cancer cells, which are eventually destroyed. The medication seeks out rapidly dividing cells (cancerous cells). The cancerous cells have lost their inhibition and keep dividing and growing out of control so this medication recognizes these out of control cells and kills them. Melphalan is used as part of the Stem cell transplant process to blast the remaining cancerous cells before the new healthy cells are transplanted.  The dosing and length of treatment varies depending on many things. Jodi only required 2 days of this medication on Monday and Tuesday which is a very short cycle as she has continued to respond very well.

Wednesday 6/23 Jodi Started the Stem Cell Transplant infusion

Stem cell transplantation. This treatment involves using high-dose chemotherapy —high doses of melphalan — along with transfusion of previously collected immature blood cells (stem cells) to replace diseased or damaged marrow. The stem cells in Jodi’s case came from her own body and were harvested from her bones a couple of weeks ago.

A stem cell transplant is the infusion of healthy stem cells into your body. A stem cell transplant can help your body make enough healthy white blood cells, red blood cells or platelets, and reduce your risk of life-threatening infections, anemia and bleeding.

Although the procedure to replenish your body's supply of healthy blood-forming cells is generally called a stem cell transplant, it's also known as a bone marrow Stem cell transplants can use cells from your own body (autologous stem cell transplant), or they can use stem cells from donors (allogenic stem cell transplant). In Jodi’s case she has bee fortunate enough to use her own cells which means no need for anti-rejection medications that are notorious for causing complications and worse out comes.

Next:

Stay tuned for further updates. Jodi will be monitored and evaluated to see how her body handles the new stem cells and integrates them into her system. Her weakest day or most immuno-compromised day will be this Saturday or Sunday as all of her bone marrow will have been shut down and the new stem cells will still be developing into new healthy bone marrow . In addition some of the side effects of the infusion and the high dose chemotherapy may start to kick in.

Jodi has done better than anyone could have predicted both with her minimal side effects thus far and her body’s response to the therapy. Everyone on the team has been very pleased and surprised with the results. I have been able to look at all the imaging, laboratory and clinical data and can confirm that so far the results have been miraculous.

Jodi checked into "the bubble" (stem cell unit) at the hospital Today 06/20

Jodi successfully entered the hospital to start the autologous stem cell transplant (using one’s own stem cells to transplant one’s own bone marrow)

Thank You:

Jodi has expressed a great amount of gratitude with regards to all of the outpouring of love and support by her friends and family. Thank you, Thank you and Thank you for all of your support, emails, phone calls, good vibes, payers and thoughts! It has been felt and helped. I assured Ed and Jodi that I would express this on the blog but as you know, there are no words that can express the gratitude Ed and Jodi have for all you. So thank you!!

Updates:

Before I describe the process and what she will be going through over the next couple of weeks I should probably update everyone on how she has been doing / responding thus far. The bone marrow transplant process deserves a post all on its own. 

First things first, the update:

Jodi has had nothing short of a miracle thus far in her treatment. Her body's response to the medications has been beyond what anyone expected. Her cancerous cell have nearly halted in their progress and the correlating cancer marker cells have declined 10 fold.

Also the negative side effects have been way less than expected. The medications (chemotherapy) thus far have been Velcade (Bortezomib),  Revlimid (Lenalidomide), and Dexamethasone and all of these medications have a long, long list of side effects, many of which are very commonly seen in most  patients.

Now we are known for hyperbole at times but it is no exaggeration that thus far the only side effects that Jodi has experienced from her medications have been fatigue, weakness, and mild occasional delirium (short term memory loss and or confusion, that is temporary and reversible). Jodi feels that she has had hair loss but she definitely has not lost her hair. She has experienced some hair thinning but still has a full head of hair and no large clumps of hair falling out like often seen in patient’s on these medications.

She has had minimal pain and has continued to remain considerably active definitely tired.

I have seen patients on these same medications end up completely bed ridden and moaning in pain and plagued with complications that are quite serious. She has been blessed to avoid these issues.

Here bad numbers have improved and good numbers have gotten better as far as her lab work is concerned. Her kidney function is normal, her calcium levels are normal, her hemoglobin is normal. She is on a trajectory at this rate for a fast induction into remission and a positive outcome.

She successfully completed her pre- autologous stem cell transplant (using one’s own stem cells to transplant one’s own bone marrow) chemotherapy cycles and has entered the next phase of her treatment. This phase includes hospital admission to the stem cell bone marrow transplant unit where she will have her own healthy bone marrow transplanted back into her bones.

What is going on now and what is the next phase: 

I will add another post dedicated to the transplant process that Jodi started today. Stay tuned for more……..