Days +10 and +11: Hello Neutrophils

Yesterday, Ezra's white blood cell count went to .2. A little movement. Today, his white blood cell count was 1.5 - a big jump and high enough to run a differential and to see neutrophils! His neutrophil count today is .8 (800). To officially engraft, you need a neutrophil count of .5 or above for 3 consecutive days. Day 1in the bag.

The next step is the one making us very nervous because it is when everything went downhill last time - chimerism. Once Ezra achieves engraftment, a blood test will be done to see whether the cells growing are Ezra's cells or the donor's cells. Last year at this stage, Ezra's chimerism showed only 20% donor cells and they continued to diminish as the months went on. If the neutrophils continue to grow in the right direction, then we are hoping this test will be sent out by the end of the week, and then we anxiously await the results.

This next phase also brings the possibility of Graft Versus Host Disease and continued risk of infection both from outside and from latent viruses that can be passed from the donor through the graft. These viruses can activate once inside of the immune compromised recipient and cause big problems.

Unfortunately, the appearance of the neutrophils has not yet improved how Ezra feels. Yesterday was the worst day he has had so far - intense pain all throughout his body. This afternoon was a little better. He also has been dealing with a fever for the past two days. It may just be part of engraftment, but the doctors are treating it as an infection. We are waiting for cultures to come back and hoping he clears it soon.

With Rosh Hashanah upon us, we are praying that this year will bring Ezra's cure and an end to his life of seclusion and hospital visits. For each of the four past Rosh Hashanahs since Ezra's diagnosis at five months old, we wondered would this be a year of good health? Of illness? Of life or of death? Each year we have prayed that the coming year would bring life and health for our baby boy. But never have the prayers that he be inscribed and sealed in the book of life felt so imminent and critical. Please let this be the year of the cure. Of health and of life.

This will likely be our last post until after Saturday night when the holiday is over. We hope our next post will have good news of engraftment and better days for Ezra. We wish you all a l'shana tova!

Days +6 to +9: No Relief Yet

Ezra continues to be in tremendous pain. We can now add excruciating leg and arm pain to the list of complaints. The doctors suspect that the pain may be bone pain from the drug he started on Friday that stimulates the bone marrow to release neutrophils into the blood, and may be a sign that cells are growing. If that's the case, we'll take it, despite how awful it is to watch him suffer. Gotta get worse before you get better seems to be the theme. We are anxiously awaiting a change in his counts. 

Ezra spent most of the weekend sleeping. It is much better that way. Let him sleep until better days are here. He has had a few lucid moments where the little chatterbox has re-appeared, like in the middle of the night when he decided he had 20 questions about Daddy's bicycles ("Daddy, how often do you ride your bike?" "Ok, that's good. How often do you ride your road bike?" How often do you ride your mountain bike?" Which bike do you buy tires for?" And so on.).

We hope that everyone is enjoying Labor Day weekend. Food services dropped off the Labor Day breakfast specials - what, no BBQ? We will save our celebrating for when we see signs of new life. Grow cells, grow.

Update on Blood and Platelet Donations

We wanted to share with you the words of the Sloan-Kettering blood bank about the donations that have been coming in for Ezra: "The fact is that we have been inundated with calls...You have a wonderfully generous community...This has been an amazing effort with many young new donors." And they don't even know the half of what Ezra's supporters have done for him! We are blown away by this outpouring of love, support and generosity.

While the donor room has been flooded the past few weeks, there aren't as many donations scheduled into September. Platelets have a shelf life of approximately 3 days and blood about one month. Ezra will be needing platelets and blood for the foreseeable future, so please consider donating in the upcoming months. We know the Jewish holidays will make it difficult for some of you to donate in September, so we greatly appreciate all efforts!

Also, as a reminder, you can be any blood type to donate platelets. For whole blood, Ezra is O+ , but if you prefer to donate whole blood, there are many other adorable little patients around here needing blood, so all blood types are accepted!

The information on how to donate is repeated below:

IMPORTANT: Family members related BY BLOOD on either side can NOT donate.

From the Sloan Blood Bank:

EZRA FINEMAN Needs Blood & Platelets

4 year old Ezra is currently a patient at Memorial Sloan-Kettering Cancer Center in New York City. His treatment will require regular blood and platelet transfusions.  Ezra's blood type is currently O+.  For platelets, you can beANY blood type. 

Ezra and his family would deeply appreciate your donation of blood and/or platelets and requests you ask others you know to donate. Donations not used by Ezra will be released for use by other patients many of whom are children.

To benefit Ezra all designated donations must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center

Please visit www.mskcc.org/blooddonations for complete information about FDA donor eligibility and the donation process for blood or platelets.

For answers to questions and to schedule an appointment that is convenient for you please Contact:      

Mary Thomas  -   212-639-3335

Donor Relations Specialist

thomasfm@mskcc.org

The Blood Donor Room –

1250 First Avenue (between 67th/68th Streets) NYC - Schwartz Building lobby

Open Every Day

Fri Sat Sun Mon     8:30am - 3:00pm

Tues Wed Th         8:30am - 7:00pm

212-639-7648

 

The process for donating whole blood takes approximately 1 hour.

The process for donating platelets takes about 2 ½ hours.

 

Appointments are necessary.

 

FREE Donor Parking -

-Somerset Parking Garage, 1365 York Avenue –entrance on 72nd Street, N.W.corner

Days +3 to +5: Pain, Pain Everywhere

Ezra continues to be in a lot of pain, too much pain. It seems like everything hurts him from his tush to his mouth to his stomach. He has been spending much of his awake time crying and uncomfortable, and his sleep time crying out about dressing changes and medicines. It is so very sad. The doctors have been increasing his pain meds slowly, but steadily to see if we can alleviate some of the discomfort. We haven't had much success yet.

Ezra's hair has also started falling out and the itchiness is driving him crazy. We can't shave his head, at least not yet, because that would be more traumatic for him. Last year, Ezra didn't have much hair, and while he lost most of it, he always had some hair on top, so he didn't notice when it was gone. In the past year, Ezra's hair has grown in fuller than before and curly. He is very proud of his curls and has never had a haircut. We know that he is going to be upset to lose his curls. We're just hoping that he keeps a little hair on top like last time so that there is one less thing for him to be upset about. We're going to miss those curls too and will eagerly await their return. 

Ezra was able to enjoy a visit with Cookie Monster through the door like old times. He makes a terrible mess and you always have to be sure to have cookies handy.

Thank you to everyone who has flooded the donor room to give blood and platelets. The response has been incredible. Ezra will continue to need platelets and blood for the foreseeable future, so please keep spreading the word. The doctor told us that Ezra is holding onto the platelets well, which she said means his body isn't destroying them as sometimes happens, and it is a sign that his GI track may not be in too bad shape because the platelets would be used up quickly to deal with inflammation and oozing.  We said it is because the platelets are being given with love by Ezra's supporters. 

We are trying not to have too many expectations about when the neutrophils will show up, but suffice to say they can't show up soon enough. Any bit of relief will go a long way at this point. Grow cells, grow.

Days +1 and +2: Long Days

Welcome to the positive days. Now that we made it through transplant day, we start counting up. Each day gets us closer to the day when Ezra will hopefully be cured. The next couple of weeks while we wait for his neutrophils to come in are expected to be the most difficult and Ezra will feel the worst.

He is feeling awful already. Mouth sores, terrible stomach pain, vomiting - he doesn't know what to complain about first. He has a PCA, which we use as frequently as he needs it, and is receiving medication to help alleviate his symptoms. We are trying to find the right dosing and schedule for all the meds to help him feel better. He has been sleeping for large parts of the day, which is really better off because he is so uncomfortable. Ezra also started on TPN (IV nutrition) today since he hasn't been able to eat more than a few bites and his tummy needs a break.

The symptoms are not expected to resolve until neutrophils come in. It's hard to be patient waiting for those cells to appear when he is suffering so much and the days already feel very long. Transplant strips you down to your core - we all feel that way. Then it is a long road  of healing and rebuilding.

Ezra is feeling worse than he ever did with his first transplant. Then again, at this point during the last transplant we were feeling like something was wrong because everyone kept saying he was doing great, but we knew he was supposed to be sicker. Ended up that we were right and the chemo didn't do its job last time. So, we take a little comfort in the fact that his sickness is in part a sign that the chemo has done what it is supposed to, clearing the way for the donor cells.

Ezra has been receiving blood and platelet transfusions from all of you amazing donors! We thank you from the bottom of our hearts for making sure Ezra gets blood products given with love!

This is one of the few smiles we've gotten out of him the past couple of days - of course when launching another handmade rocket!

Day 0: Transplant Day

At 4:40 PM, Ezra Jordan Fineman received a second chance for a long, healthy life. It came in the form of 10 MLs  of yellowish liquid in a large syringe. That is what life-saving cells look like. Incredible to comprehend. Ezra slept surrounded by his mommy and daddy while the doctor slowly pushed the cells into his central line. To us, it felt like the moment when everything changes. In those cells, we saw playdates, birthday parties, school and family gatherings. And now the stem cells are inside his body traveling to where they need to be.

Shortly before the transplant, Ezra's primary doctor came to tell us that the cell dose is huge - so big that they are saving some cells and freezing it in case Ezra should need them in the future. They said that if they could choose a graft, it would look like this one. Tears of gratitude for his incredible donor upon hearing this news. 

Now we wait. The next milestone is neutrophil engraftment. Neutrophils are the first cell to grow back. Engraftment is when the neutrophils reach over 500 for 3 consecutive days. This is expected to take on average 12 days for this type of transplant.

This is a frightening time period until the neutrophils start to come in. The things we are praying for are 1) speedy donor cell engraftment; 2) no infections; and 3) no graft versus host disease (GVHD). 

Ezra is really suffering the effects of the chemo. He is also puffy from all the fluids he has been getting and the steroids. The steroids have stopped thankfully and the fluids will go down a bit now. Despite how miserable he feels, Ezra spent Day Zero doing two of his favorite things - demolishing block buildings and creating a new volcano. 

We are also struck by how dependent Ezra's life has been on the generosity of strangers. Our hero of a donor. All the family, friends and strangers lining up to donate platelets and blood. The people who donate plasma to make the immunoglobulin therapy that Ezra has received every 4 weeks since he was 4 months old. All the people around the world who swabbed their cheeks or gave blood to join the bone marrow registry to see if they are a match for Ezra. It feels like there is a little piece of so many others inside our son. How lucky we are to receive such love and support. 

We are doing all we can to make Ezra comfortable and happy during this time. It breaks our hearts to see him suffer so much. All we can do is to keep the goal of a cure front and center. If this transplant works it will be nothing short of a miracle. A miracle that Ezra has fought long and hard to obtain.

Day -1: No Rest on Rest Day

Today was supposed to be a rest day, meaning that Ezra is done with the chemo and his body is given a day of "rest" from chemo before tomorrow's transplant. No rest for Ezra today with line surgery number five. The surgery went fine, but Ezra is in pain as expected, was very upset about having to get another line and was generally miserable. Pain on top of his discomfort from the chemo. Too much for a little boy to comprehend. Of all the things we deal with, the surgeries are pretty much the worst. Please let this be the last of it. 

Ezra's counts have bottomed out and are where they should be to make room for the new cells. Ezra continues to feel sick, although he does have big chunks of time during the day when he is active and playful. Lately, he is spending his time concocting his own "experiments," using every condiment we can find in the pantry or building "machines" and structures out of straws, medical supplies and lots of duck tape. Always the little scientist-engineer!

Our thoughts today were also focused on Ezra's donor. Somewhere in the country, a very brave and giving young woman was having her stem cells collected today to be given to our baby boy. The method being used for Ezra's transplant is called peripheral blood stem cell (PBSC) collection. She will have already had shots for about four days of a drug that stimulates stem cells to move out of the bone marrow and into the blood stream. Today, she had IVs placed in her arms and her blood went through an apheresis machine, which separated out the stem cells, collected them and returned the rest. This takes several hours. We are praying that she experienced minimal discomfort and that the collection went smoothly. While she isn't a perfect match, we are hopeful that she is just the right match for Ezra to provide him with the elusive cure. She is our needle in the haystack. Our hope when we had none. Our hero.

The doctor came by tonight to tell us that the courier caught an early flight and the cells should be at the hospital at some point tonight. A good sign that things went smoothly. The lab here will then process the cells through the machine that T cell depletes. The transplant will likely happen tomorrow afternoon. 

Please think positive thoughts and send prayers that tomorrow's transplant goes smoothly and marks the beginning of Ezra's second chance for a healthy, long life. We will try to update tomorrow.