Living with Leukemia

It’s been many weeks since we provided an update on Deb’s health and her battle with acute myeloid leukemia, one of the most challenging and low survival rate cancers.  For the past weeks, we have been waiting for results from the donor cell infusion that took place on April 1st.  Unfortunately, the procedure was not successful.

Deb has become more and more tired since that time and spends much of her time in bed or getting blood transfusions at Kaiser. This is very challenging for her as she has always lived a very active lifestyle dancing, bicycling and walking, etc.  Deb has lost 40 pounds since this journey began further contributing to her weakness; she has difficulty walking without assistance. She is deeply missing her old life and being with all of you in the community.

Deb recently had another bone marrow biopsy and the results are similar to her last two biopsies.  Her bone marrow has a condition called serous atrophy which means the fat cells and stem cells that should be there have atrophied and been replaced with a gelatinous substance.  The biopsy also shows clusters of primitive cells that may or may not be leukemia.  They may be baby stem cells that cannot grow because the marrow is not healthy.  Stem cells need a healthy bone marrow supporting structure in order for them to grow.  There is no benefit to doing another donor infusion now while Deb’s bone marrow is in this condition.  Deb’s doctor said if she can gain about 25 pounds in the next 2-3 months, there is a chance that her marrow will recover. Then she could have the second donor infusion, which could take months to a year to determine its success; the chance of success is between 5% and 15%, assuming no complications.

Deb is trying very hard to eat more, but her stomach can only hold so much and then she sometimes has stomach pain.  But she is eating significantly more than she was a month ago, so we hope her stomach is stretching and will continue to be able to accept more food. Her doctor has also indicated that this weight gain over the coming months is necessary if she is to have a chance of recovering.  Deb is continuing to have platelet and red cell transfusions as needed – this is what is keeping her alive (if you’re not a blood donor, please consider becoming one!).

Deb has recently developed neuropathy (tingling and numbness) in her toes and feet, which is painful, uncomfortable, and makes it more difficult to walk.  We are rubbing Deb’s feet daily with neuropathy oil.

Deb, Andy and I thank you all for your love and support.

Mother’s Day

As I celebrate Mother’s Day this year, I am grateful to be in CA supporting my amazing daughter Deb in her ongoing battle against leukemia, while I dearly miss my equally amazing daughter Chris and my delightful grandchildren, Carly and Drew.  So many different emotions to deal with …

Deb continues with her ups and downs and blood transfusions, as we patiently (or more truthfully, impatiently) await the 8-10 week time frame from her donor lymphocyte infusion of April 1.  Early June is when we should have a better indication of whether or not the infusion will work.  In the meantime, we are taking it day by day and continue to pray for her recovery.

A big thank you to Deb’s wonderful friends (you know who you are) who have been visiting with Deb and pouring out your love and support, providing energy healing, positive intentions, and beautiful music therapy.  And many thanks to Andy, Deb’s unbelievably loving and caring husband, who is so solidly with her day and night.  Thank you all for your love, we so appreciate you being with us on this journey.

Happy Mother’s Day to all the Moms out there, and love to all of you who continue to support us with your prayers, concern, cards and messages.

Mary Lou

Back Home from the Hospital

Compared to most of Deb’s hospital stays, this was a short one … but any number of days in the hospital is more than we want.  Deb was released on Saturday after her latest chest x-ray came back clear.  She is on a couple of new strong antibiotics along with her other medications.  She is having continued difficulties with her asthma and breathing.  Deb’s blood transfusions are required more frequently now.  This may be a result of the donor infusion and is expected to continue for a few weeks before the counts begin to rise again.  In the meantime, Deb is trying to gain back some strength and energy.

Revisiting the Hospital

One thing Deb really hoped to avoid was going back into the hospital.  For the past 7 weeks at home, Andy and I have done everything we could to keep that from happening.  We’ve made sure that Deb receives all her medications, nebulizers and oxygen as needed, gets daily exercise, and we tried to keep her comfortable, hydrated, and focused on eating and keeping her food down.  With the many complexities of Deb’s leukemia, this is not always so easy to do.  Her persistent cough often leads to a gag reflex which causes her food to come up, which in turn makes it difficult for her to put weight back on.  Her blood counts have been dropping at a faster rate recently, which means more trips to the hospital for transfusions.  While Deb was in the ER for her most recent platelet transfusion, they took a chest x-ray which showed an area suspicious of pneumonia.  Although Deb is on multiple oral antibiotics already, the best treatment for pneumonia is IV antibiotics, so she was re-admitted to Kaiser Permanente Hospital on Monday night so these could be administered.  She was also in need of a red cell transfusion which she received on Tuesday.

It’s possible that the donor cell infusion which Deb had on April 1 could be causing some of these issues.  It came with the risk of getting worse before getting better, including lower blood counts and greater chance of infection.  It’s a little sooner than we anticipated this to occur so it’s hard to tell what the cause is.  Deb has been running fevers for over a month now, and they persist.

Please join us in praying that Deb’s hospital stay will be short so she can return soon to the comfort of her home to continue her recovery.  Thanks for your continued love and support.

Riding the Waves

Deb has been out of the hospital for a month now, and I know an update is long overdue.  Deb was extremely weak when she came home, and is still struggling to do basic things like walk up stairs alone.  For the first couple of weeks she began to gain weight and get stronger from eating better, sleeping more, and doing some gentle exercises.  Deb has a visiting nurse who comes three times a week to evaluate her progress, draw blood to determine if a transfusion is needed, and to discuss any issues that we may have.  Deb continues to require red cell and platelet transfusions about every 2-3 weeks at Kaiser Permanente.

Deb’s breathing difficulties and wheezing have vastly improved over the past 10 days, but the cough persists.  She started to receive acupuncture treatments and take Chinese herbs to help with her lung problems.  Deb’s Stanford doctor gave his approval to seek this form of treatment.   It’s amazing how much her asthma improved quickly.

Two weeks ago Deb began running a fever, and this has completely drained her energy.  Last week a chest x-ray showed a small spot on her lung suspicious of pneumonia.  She was put on an additional antibiotic for 10 days (she was already on three).  Yesterday a second chest x-ray was taken and was clear – no pneumonia.  But her cough persists.  She is also very tired again, naps often, and has little energy since the fever began.

Over the last week or so, Deb has been throwing up some, and as a result is not eating a lot and has lost the weight she had gained back.  She’s at 80 pounds, her weight when she was released from the hospital (normal for Deb is 110 – so this is nearly 30% of her body weight). Today we did an x-ray of Deb’s stomach/intestines to see if there is a blockage.  The x-ray was clear of any blockage but apparently she has a lot of stool stuck in the small and large intestines which would contribute to the lack of appetite and throwing up.  They are still looking to see if there is infection anywhere which might be the cause of the fever; or it could be caused by the leukemia.  So, testing continues.

Deb is scheduled to have a donor lymphocyte infusion (DLI) on March 31 at Stanford, but we may only be able to do this procedure if the fever is gone.  They don’t want to infuse if there is an active infection.

The DLI is an infusion of lymphocytes (a type of white blood cells) from Deb’s original donor, Mr. International, and is intended to produce an anti-tumor response.  This “graft-versus-tumor” effect (GVT), in which the donor’s cells attack and kill any residual cancer cells, is effective in curing AML patients 10-12 percent of the time, but the doctor said Deb has a 10-20 percent chance.  Another 25 percent of patients are predicted to survive but have other health problems from graft versus host disease (GVHD).  With graft versus host disease, the donor cells see the good cells of the recipient as foreign and attack them too, as well as attacking the leukemia cells.  The GVHD can range from mild to severe.  Deb’s inability to be in any sunlight following her transplant last March is actually considered to be “mild’ GVHD, although it represents a huge change in lifestyle for my daughter who loves the outdoors, bicycling, hiking, swimming, and being in the sun.

We thank you all for your support, prayers, and positive energy, which help us more than you can imagine. Big decisions will be made in the next week.

Challenging Times

Deb’s chemo treatments were from Jan. 7-11.  The side effects set in the second week, and she continues to deal with other challenging issues – breathing difficulties, coughing, fever, and low blood counts with frequent platelet and red cell transfusions.  The off and on fever indicates an infection, but it has been hard for the doctors to determine where the infection is, despite X-rays, CT scan, MRI, blood cultures and more.  Deb is taking many antibiotics and other meds to help treat any infection that may be there.

Deb is fatigued from the frequent coughing and breathing difficulties which make it hard for her to get much sleep –and add to that the constant hospital interruptions, and she is quite exhausted.  It’s hard for me to see my vibrant energetic Deb with so little energy.

On the positive side, Deb’s white blood counts went from zero (where they had been for several days) up to 0.1.  It may not sound like much, but it’s a step in the right direction.  As Deb’s counts continue to rise over the next couple of weeks, it will boost her immune system, her body will get more energy, and she will be able to better fight any infection that may be there.

Thanks as always for all your prayers, concern, cards and messages.  Deb is not able to respond to you at this time but please know that everything is very much appreciated.

Mary Lou

A Beautiful Wedding and more … December 28, 2014

Deb Andy wedding 1People have been asking me (Mary Lou) why there haven’t been any recent updates, and the answer is simply that we have been very, very busy.  The happy news I have to share is that Deb and her sweetheart Andy were married on Sunday, December 28, in a lovely home ceremony.  It was iffy to the end whether Deb would be well enough to be out of the hospital, but somehow she rallied and was able to come home for a couple of days and be married in the presence of close family and friends.  Deb was a stunning bride, and Andy a handsome groom.  We all shared in their strong love and devotion for each other, and wish them many years of happiness together.

On the medical side, the last two months have been quite Deb Andy wedding 2tough.  We had been praying for a miraculous healing over the past few weeks, with the hopes that the donor cells would rally and kill the leukemia cells, but this has not happened.  In addition, Deb became sick with a bad cough, wheezing, and shortness of breath.  The onset began slowly during the month of November, but has escalated significantly during December.  Deb’s doctor had cautioned that something that would take a healthy person a week to get over could take her a couple of months or more, since her immune system is compromised.  After a few doctor visits, x-rays, CT scan, additional meds, and several outpatient red blood cell and platelet transfusions, Deb was finally admitted to the hospital on 12/20, released on 12/26, and re-admitted on 12/29.  The only thing she has tested positive for so far is the rhinovirus, which is the common cold.  Today they did another x-ray and CT scan, as she still has a deep cough and requires oxygen to ease her breathing.  Deb suffered from asthma since she was 5 years old, but her asthma had gone away after her stem cell transplant, when she acquired the immune system of her donor.  She had several months of no asthma and no asthma meds until the leukemia recurred again.

Deb’s chemotherapy was scheduled to start 12/29, but that has been delayed as they would like to clear up the respiratory issues before starting chemo if possible.  Deb is expected to remain in the hospital for at least a month, as it takes time after the chemotherapy for her blood counts and immune system to build back up.

Thank you all for your prayers and caring, and many messages of hope and encouragement.

A Prayer for Healing – Biopsy Results

Dear Friends,

Little Debbie, 6 years old -- Embracing my inner child.
Little Debbie, 6 years old — Embracing my inner child.

As you know we’ve been waiting for news on my bone marrow biopsy which was done twice because of inconclusive test results. Unfortunately, on Tuesday the Stanford doctor told me he is 99.5% sure that my condition is recurrent leukemia.  This is definitely the worst diagnosis for my situation, and was not the news that I wanted to hear. I was hoping (and still am) that the bone marrow transplant was my cure.  I’m not giving up.

My doctor says that there is currently a fight going on in my bone marrow between the leukemia and my donor’s cells.  My soul is burning and asking me to join this fight for my survival because I so deeply love this life.  While my donor cells fight the leukemia and while my fighting spirit is strong, I am reminded of the need to commit again and again to cultivating love and letting go of fear, which visits often. While I fight for my life, my intention is also to surrender: to live each moment as it comes and not worry about what has taken place in the past or what may happen in the future.  I believe that I can both surrender to the Divine, and fight for my life at the same time. This strong will to live comes from my heart, which honestly is aching.

There is a 5 percent chance that I could have a miraculous healing over the next 5 weeks where my bone marrow will succeed in fighting back and killing the immature cells which the doctors think is leukemia. This is my hope and prayer – that my body naturally rallies and overcomes the cancer this month.  This means that my bone marrow will be making all healthy blood cells – white cells, red cells and platelets — in all of the correct proportions, and there will not be immature cells or blasts. Currently, I am having blood transfusions regularly because my bone marrow is not making enough of these healthy cells.

I believe in love, and the power of intention. With my love and all of those around me, it is my hope that we can smother the cancer and say goodbye to it forever.

I have another biopsy scheduled for January 7, and if that one looks like leukemia, I will be re-admitted to Kaiser Permanente in San Rafael again to undergo chemotherapy while I live in the oncology unit.  There would be two rounds of chemo, each requiring about a 5-6 week stay in the hospital. The chemo is hard to handle, and I hope that I don’t have to go this route, but I will if I need to.

I thought I was cured of AML, so this news is very surprising. Over the past month as my blood counts dropped and I got sick again the doctors kept saying that they thought it was graft rejection (easier to cure), and not leukemia.  In the face of this challenge, I am working hard to keep a positive attitude and envision myself having a long healthy life with my partner Andy, and enjoying my friends and family. I am doing some deep spiritual work to meditate, do Reiki, and clear any issues that are holding me back.  I’m working to commune with and heal my inner child, “little Debbie,” whose picture I have included with this blog.

I have overcome many challenges in the past and plan to do so with this one too!  When I was 17 and had reconstructive knee surgery my doctor said I would never do gymnastics again, but I was doing back flips within the year. When I injured my other knee skiing 5 years ago, the doctor said I could not be healed without surgery, but an MRI six months later proved that I had healed my ACL with meditation and Reiki.  There have also been many political situations where people said what I wanted “could not be done,” but I made it happen (with help from others), like building the Cal Park Hill Tunnel, forming the Safe Routes to School National Partnership, and securing the Nonmotorized Transportation Pilot Program federal legislation which provided key outcomes nationally for why investments in walking and bicycling improve health, reduce greenhouse gas emissions and improve safety.

If it feels right to you, please continue to hold me in a healing light and I gladly accept and am grateful for prayers for my full recovery, as quickly as possible.  Please envision me fully healthy, happy and vibrant, with my bone marrow and body healing naturally over the next month – so that I am cancer free forever.

I have much more to give and to live in this life, and deeply hope to have that opportunity.  Thank you for your love and being my ally.

Love always,
Deb

A Setback

Hi everyone, this is Mary Lou, Deb’s Mom.  Deb had been recovering well from her stem cell transplant (March 19), with only minor issues over the past few months.  By September she felt like she was getting more energy back.  Then about three weeks ago she suddenly started feeling very tired again.  Blood work showed that her blood counts had dropped significantly in a short time period.  Both the Stanford and Kaiser doctors were concerned and asked for repeat blood tests. With each test, the blood levels went lower, and Thursday her hemoglobin reached a level where a red blood cell transfusion was needed.  Deb was admitted to the hospital Thursday night (November 13) and received the transfusion yesterday.  She will remain in the hospital over the weekend as a platelet transfusion may be required.  She was also running a low grade fever which spiked last night, and then went down, so they have added a broad spectrum antibiotic to her IV schedule and are watching her closely for signs of infection, which can be particularly dangerous when blood counts are low.

A bone marrow biopsy is the only way to determine what is causing the blood counts to drop, and that procedure was done last Wednesday.  Unfortunately we will not get the results until Monday, so we have a long weekend to wait to know the outcome and what the plan will be going forward.  We are praying that it is not a return of the leukemia.  There are also other conditions that can cause the blood counts to fall, such as “primitive” donor cells, which are not stem cells, dying off, which can then appear as a drop.

Ironically, a couple of months ago I had planned a trip to CA for my first visit with Deb since returning home after we left Stanford in June.  I arrived in CA last week, and while it didn’t turn out to be the fun visit we had hoped for, I am glad that I am here to be with her through this.

Thank you everyone for your support and prayers which mean so much to us.

Going Home Soon!

Good news! The plan is that I’m moving home soon!

I left Marin on March 9 to come to Stanford Hospital to have my bone marrow transplant (BMT) and to be cured of AML forever. I was discharged on April 8, and my Mom and I have been living in a very nice townhouse on the Stanford campus since that time. Because I’m doing so well healing, we recently got the green light that I’m ready to live at home again!  The moving date is planned for June 18 which is +91 days since my BMT.

There are a few important things that have to happen before I go home though. On Wednesday, June 11, I will have a bone marrow biopsy (to ensure that there is no cancer left in my system), and that same day I will have my central catheter removed.  My Mom and I will be at the infusion treatment area (ITA) at the hospital for most of the day.  It will be my seventh bone marrow biopsy since last October, and the first without my boyfriend Andy holding my hand — but my Mom will support me!  Bone marrow biopsies are never fun, and have usually been quite painful for me – so I’ve asked for pain killers this time…

The catheter was inserted into my chest three months ago.  During the month I was in the hospital, it was used to deliver chemotherapy, blood transfusions, antibiotics, IV food and hydration, and the stem cells from my anonymous donor.  The catheter has also been used twice a week since I left the hospital at the ITA to draw blood for the complete blood count (CBC) which measures my levels of white cells (fight infections), red cells (carry oxygen), and platelets (form blood clots).  The doctors and nurses are pleased with my blood counts, which are all slightly below a “normal” person’s levels, but they say my counts are “normal” for a BMT patient at this time in my healing process.

I have an appointment with my bone marrow transplant doctor at Stanford Hospital, Dr. Robert Lowsky, on June 18, and afterwards, Andy, Mom and I plan to hit the road back to Marin County.  I will learn the preliminary results of my bone marrow biopsy at that appointment and am anticipating and praying that it will be cancer free, now and forever!  If you’d like to support my healing by envisioning a clean bone marrow biopsy with only healthy cells, I would greatly appreciate your support. I intuitively have felt since the BMT that the leukemia is gone, but it will feel really good to have the biopsy results to confirm that hunch.

June 27 marks the magic Day +100 when I can start to go outside in public without my mask.  I’m thrilled to be approaching day 100, as the first 100 days are the most critical for BMT patients.  It’s a landmark to be post day 100!  However, I will remain at increased risk for developing infections and the post-transplant illness called graft vs host disease, and will still be taking numerous medications, so the healing and doctor appointments will continue.  I’ll be seeing both my Stanford and Kaiser Permanente doctors for some time after I move back home, and bone marrow biopsies will be scheduled for every 3 months.

The only sad thing coming up is that my Mom will be flying home to Pennsylvania soon after we return to Marin.  She’s my amazing caregiver, Mom and friend, and I will miss her, our evening walks, night-time movies, cooking and companionship.

Celebrating my “45 and Stayin’ Alive” birthday!  (No, my hair hasn’t grown back yet, I’m wearing one of my wigs).
Celebrating my “45 and Stayin’ Alive” birthday! (No, my hair hasn’t grown back yet, I’m wearing one of my wigs).

Throughout this entire process, I continue to be so grateful for everyone’s love and support, and for the skill of the doctors and nurses who have been treating me. So many people are still sending prayers and good energy – thank you! This is very helpful. I definitely have a lot more healing to do to strengthen my new immune system, and increase my blood counts and energy.

I recently had a birthday, and my motto is, “45 and Stayin’ Alive!”  Does that make you want to start dancing to the 70’s Bee Gees’ song?  “Ah, ha, ha, ha stayin’ alive, stayin’ alive…!”  Hope to see you on a dance floor soon.

A little bump in the road

Happy Easter everyone!  It’s another lovely sunny day in Stanford.  Since we’ve been here, day after day has been beautiful and cloudless, one of the things that people love so much about California … unless, that is, you cannot be out in the sun.  Deb is now extremely sensitive to the sun, which can trigger Graft vs Host Disease (GVHD), a common complication of an allogeneic transplant.  GVHD develops when the donor’s immune cells regard the recipient (the host) as “foreign.”  The transplanted immune cells then attack the host’s body cells.  This often manifests as skin rashes and blisters, gastrointestinal problems, and jaundice.

The doctors encourage Deb to take walks, and we usually go out late in the day and walk for about 20 minutes.  On Wednesday we thought we’d try to take a couple of walks, and went out for our first walk in the late morning.  Deb was covered from head to toe with a hat, scarf, gloves, jacket and long pants.  She had on her big HEPA filter mask, so there was only a small part of her face that was exposed.  We mostly stayed in the shade, but there were some areas on the path that were in the sun.  That afternoon, Deb’s face started getting red, itchy and swollen.  She also got a rash on her neck, chest and back.  We went to the Cancer Clinic the next morning, and they said it was GVHD.  They told us it doesn’t take much sun to trigger GVHD, and once it starts, it can spread to areas that were not exposed to the sun.  This was quite a wake-up call for us; we knew Deb couldn’t spend much time in the sun, but we didn’t realize just how sensitive she is to it.  Deb was prescribed some steroid creams to use, and they have helped to improve the rash, but it is not all cleared up yet.  It’s been uncomfortable and itchy, and an unexpected blip when things seemed to be going so well.

The positive aspect to this is that they say a little GVHD can be good.  Here is a quote from the Be The Match website:  “Doctors often see mild GVHD as a good thing after an allogeneic transplant when the transplant was done for a blood cancer.  It is a sign that the donor’s immune system is working to destroy any remaining cancer cells.  Patients who experience some GVHD have a lower risk of the cancer returning after transplant than patients who do not develop GVHD.”  So we’ll try to look at this as a positive learning experience, but we’ll be taking all of our walks in the evening from now on!

What a difference a week makes!

This is Deb’s Mom again, Mary Lou, and I am happy to say that Deb is improving a little every day.  It’s truly amazing when I think of Deb’s anonymous donor, a 32 year old man from Europe, whose blood-making stem cells have replaced Deb’s and have given her another chance at life.  What a generous gift for him to have given!  Deb’s blood counts have been steadily rising.  Her white cell counts and platelets are now back in the normal range for the first time since she was diagnosed with AML in October, and her hemoglobin is not too far behind.  This is remarkable as her transplant was just four weeks ago, and she was still receiving blood transfusions less than two weeks ago.

Deb is slowly regaining some energy, but still has a lot of fatigue and needs to take frequent naps.  Just going to her outpatient appointments at the hospital is an exhausting process for her.  It takes about four hours, as they draw blood, take her vitals, wait for results, and then come back and discuss her progress with us, adjust medications as needed, and answer our questions.  It takes a long time for the body to recover from the intense treatment received prior to the transplant.  They say it will take about six months for Deb not to feel so tired all the time, and a year or more to recover to the point where she can resume most of her usual activities.  Deb, of course, hopes it will be faster than that!  We are taking short walks daily as gentle exercise is an important part of regaining strength.  Below is a link which discusses recovery in days 30 to 100.

http://bethematch.org/For-Patients-and-Families/Getting-a-transplant/Early-recovery–Days-30-100/

Thanks to all of you for your love and support to Deb and to me too, as her caregiver.  It helps a lot knowing so many people are taking this journey with us.

Breaking out of the hospital …

Deb and her friend Tara, discharge from Stanford Hospital
Deb and her friend Tara, discharge from Stanford Hospital

I am happy to say that Deb was discharged from Stanford Hospital late Tuesday afternoon.  She was so glad to come to the lovely townhouse we are renting, and not be disturbed with beeps, taking vitals every 4 hours, etc.  Deb is not out of the woods, though, by any means.  We have already been to the outpatient clinic for blood draws early this morning, and she has another appointment this afternoon.  The length of that appointment depends upon whether she needs transfusions, hydration, or anything else.  Deb still has her central catheter in, and that will stay in for the time period we are here.

Deb is very tired, and was asleep again almost as soon as we walked in the door from the blood draw.  She is very weak; she was receiving IV hydration and nutrition for the past couple of weeks, and she now has to intake all of that orally.  She does not have much appetite and her throat still bothers her from the mucositis (sores), so she can only eat very soft foods.  Pray for Deb’s appetite to improve as she needs food to get her strength back again.

Monday and Tuesday were busy days for me as Deb’s caregiver.  I had to learn how to change the catheter dressing and flush the tubes.  We had a discharge meeting with the nurse, a meeting with the physical therapist to go over recommended activity and restrictions, and a meeting with the pharmacist on administering the many medications that Deb is still taking.  I also had to pack and move from the apartment that I was renting to the townhouse (thanks Andy, for your help), and then we had to pack up Deb and move her from the hospital (thanks Andy and Tara).  I couldn’t have done it all myself!

Please keep the prayers and positive energy coming Deb’s way, as she still has a long way to go on the road to recovery.

 

Looking ahead to discharge

Deb's IV pole -- her constant companion for the past few weeks
Deb’s IV pole — her constant companion for the past few weeks

It’s hard to believe, but we are actually starting to talk about when Deb will be discharged from the hospital!  The doctors had said she would improve quickly when her white blood counts came up, and so it is.  However certain criteria must be met for Deb to be discharged.  Her blood cell counts must be at a satisfactory level; her oral fluid and food intake must be sufficient to maintain hydration and weight; she cannot be running a fever; and she must be off all IV meds and able to swallow a pill.  She was able to drink fluids today, and tomorrow will try some soft food.  I’ve attached a picture of Deb’s IV pole; they are in the process of weaning her off of everything (or transitioning from IV to pill form), and the goal is for discharge on Tuesday, April 8.  Needless to say, she is very excited!

After her release from the hospital, Deb is required to live nearby with a caregiver (that will be me, Deb’s Mom) for 90 days from the date of transplant.  She will have frequent appointments at the hospital as an outpatient during this time period for blood counts, transfusions if needed, and to be monitored closely for infections, side effects, and Graft vs Host Disease (GVHD), which can begin at any time in the first year after transplant or even beyond.  We are renting a charming townhouse on the Stanford University campus and will be about 2-1/2 miles from the hospital.  The owners are going away for three months, and the timing is perfect for us.  We are so happy to have found such a nice place to stay, our “home away from home” for a while.  It’s a lovely and quiet community with walking paths and a swimming pool – not that Deb will be swimming (she’s not allowed), or sitting in the sun (that’s not allowed either), but it will be a nice place to go and be outdoors (wearing her HEPA filter mask, of course).

Deb is not out of the woods yet, but she has improved a lot over the past few days.  It sure is nice to have some good news to relay after some really tough weeks.  Keep those prayers and positive thoughts coming!

Day +14 = Engraftment!

We were thrilled this evening when Deb’s blood counts came in and we learned that engraftment has started!  (Engraftment is when the stem cells she received from her donor start growing and developing, and her bone marrow and immune system begin to recover.) The first sign of engraftment is rising white blood counts, and Deb’s are beginning to go up.  As the white cells increase they will fight the mucositis so her mouth and throat sores should begin to improve.  Deb’s hemoglobin and platelets are also starting to rise.  Her last transfusion was on Monday night, and we are hoping that she won’t need any more … but we still have to take it day by day.

Deb will continue to receive hydration and nutrition through the IV until she is able to eat and drink a sufficient amount.  She still has pain when trying to swallow anything, but each day now there should be some improvement.  We are very grateful to the Stanford medical team and to “Mr. International” (as we fondly call Deb’s anonymous donor) for making this miracle possible.

All your love and prayers are helping … thank you everyone!

Day +11 (Sunday)

Despite the pain and other side effects that Deb has suffered, the doctors and nurses continue to tell us that she is doing really well.  The side effects are to be expected, and mean that the treatments are working as they should.  So side effects are good, in an odd sort of a way.  Complications are not good, and so far Deb has not had any real complications, such as high fever, pneumonia or other infections.  When Deb spiked her first fever, they took blood cultures, urine culture and a chest x-ray, and all came back negative.  Her fever responded to the Tylenol and went down, and while it’s up and down a bit each day, it is not at a dangerous level.  Her blood pressure and other vital signs remain in normal ranges.  So we have many things to be thankful for.  In December, after Deb’s second chemo treatment, she ended up in ICU with a skin infection and pneumonia, and that was very scary.  We hope and pray that she will avoid anything like that happening again.

Even though Deb is doing well from a medical standpoint, it was a tough weekend for her with the mouth and throat pain, two platelet transfusions and one red blood cell transfusion.  Deb also has had some breathing problems as she has chronic asthma, so she is receiving treatments for that too.  She probably will not be able to eat for several more days, but she did get her voice back, although they want her to rest it as much as possible.

Today Deb had her fourth and last dose of Methotrexate, one of the drugs given to help prevent Graft vs Host Disease.  Methotrexate causes mouth sores, so we’re glad that is over with, and she should be able to start healing soon.  We are now waiting for engraftment, which is when the stem cells she received from her donor start growing and developing, and her bone marrow and immune system begin to recover.  Signs of engraftment usually appear about 2 to 3 weeks after the transplant.  The first sign is a rising white blood count.  The doctors say that once Deb’s immune system starts to recover, her condition will improve rather quickly.

Thanks to you all for your prayers and messages of support and love.

Mary Lou

Day +8 after Stem Cell Transplant

Thursday was Day +8.  Deb’s doctor had told her that this process would be tough, and he’s right, it is.  Deb had a rough night Wednesday night, not much sleep.  Her platelets were down to 6 so she had a platelet transfusion, but it was at 3 AM.  She asked me to come early on Thursday so I was here at 8 AM when the doctors made their rounds.  They have increased her pain medication.  Her mouth is swollen and she has sores, and her throat is painful, too painful to eat, drink or talk.  She chews on ice for a little bit of relief.  She can’t talk so she writes everything, or we do charades.  She’s getting really good at that!

This afternoon Deb’s temp went to 100.6.  In a neutropenic patient like Deb (low white blood cells or neutrophils), the usual signs of infection (redness, swelling, and pus formation) are absent.  When the temperature reaches 100.4, a neutropenic patient is assessed for the possibility of infection.  This includes doing blood cultures, urine culture, and a chest x-ray.  All this happened this afternoon.  We don’t have results yet, and often no infection is found, but because of her very low immunity she has been started on additional IV broad spectrum antibiotics.  Tonight Deb will receive her third red blood cell transfusion since the transplant, as her hemoglobin is at 7.4.  The transfusion is scheduled for around midnight.  It makes it hard to sleep!

The positive news is that the doctors say Deb is right where she is supposed to be in the process.  That doesn’t make the pain go away for her, but it helps to alleviate concerns that something is wrong.  Deb’s side effects are normal for the treatments she has received.

Mary Lou

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