Saturday, September 28, 2013

Days +30 to +37: A Hard First Week at Home

Our first week home has been a challenging one. We had hoped that Ezra's pain would magically disappear once we were in the safety and comfort of our home. This has not been the case at all. Ezra is still in a tremendous amount of pain from his stomach and his legs. He  spends most of his days on the couch crying and whimpering in pain. He is still on heavy duty pain medication. The plan for now is to wait and see a little while longer in hopes that he starts to improve. Investigating his stomach pain further will mean invasive testing, and no one is in a rush to do that. His leg pain is likely a combination of his bone marrow hard at work rebuilding and muscular deconditioning from all the time spent in the hospital. We are working on getting him evaluated for PT, and trying to get him doing more physically each day. Other than that, we feel very helpless in our ability to alleviate his pain. Watching him suffer is wearing us all down.

Getting Ezra used to going to clinic again has also been a challenge. As one of his doctors put it, Ezra has a bad case of "hospitalitis." Very true. Who can blame him? He also has been having anxiety about his port being accessed again. He forgot what it feels like after having a central line. By our third visit this past week, he was getting better at it, and hopefully the whole process will begin to be more routine as time goes by.

On a positive note, Ezra's counts have been stable, and he has been able to avoid needing the drug to stimulate neutrophils this past week, which is great news. His platelets and hemoglobin have also been good and he has not needed transfusions in a while. We thank each of you who donated blood or platelets from the bottoms our hearts. You have all played a critical role in Ezra's healing, and we believe there is a little part of all of you inside of him. Please consider donating again in the future as there is still a floor full of other children in need of blood and platelets.

Despite the overwhelming pain, we've gotten Ezra to spend short bursts of time outside in this glorious weather. Watching him rediscover his swing set (a/k/a "Ezra's Park") was joyous. A huge smile spread across his face with that first push of the swing. He was so happy he started humming and singing. It felt like each swing was chipping away at the gray days of the hospital. We watched him approach his slide with trepidation and then rejoiced when he reached the bottom and shouted triumphantly "let's do that again!"

Playtime is short as Ezra is weak. He lost a substantial amount of weight during the transplant process. He is eating, but with the pain he is feeling, his appetite is not back to normal. Transplant patients require more calories to support all the re-building of cells and tissue that has to happen. Between that and his pain, eating is a focus and a challenge. The days are spent getting Ezra to eat, take his meds, and attempting to alleviate his pain as much as we can.

Chimerism will be checked again soon - likely this week - so please pray that he remains 100% donor cells. And that he gets some relief soon from the pain.

Saturday, September 21, 2013

Days +26 to +29: We Are Home!

To cheers and a standing ovation, Ezra Jordan Fineman, for the second time in his young life, slowly walked himself out of the pediatric bone marrow transplant unit at Sloan-Kettering yesterday. Yes, we are home! We've known for about a week that discharge was on the horizon, but we had no idea of the timeframe the doctors had in mind, and it was all day by day depending on how Ezra was doing. Then suddenly it was you're out of here, pack your bags, adios! In the past few days, Ezra turned a corner and his appetite kicked in and he started eating more, drinking lots and maintaining his electrolytes without IV fluids. That was the sign the doctors were looking for to know he will be ok at home. So here we are.

We still can't believe we're home. Last year we weren't discharged until Day +66. This time it is Day +28. A world of difference.

Discharge day was busy and chaotic with last minute meds and packing. And then came the part we were most nervous about - Ezra needed his central line pulled out. We will now use his mediport for labs and medications. Ezra was traumatized by the last incident when the line broke and has been having nightmares about his central line, so we were very concerned about doing it again. But with the help of his fabulous friend Jessica from child life, he did amazingly well. Please, please let this be the last time we ever have to think about a central line. 

When we first arrived home, Ezra was in a fog of pain, but slowly the fact that he was home settled in and we watched with joy as he ran from toy to toy as if we had let him loose in a toy store. The house feels so bright and clean and the air outside smells beyond fresh. The best part is the quiet - no beeping pumps, vitals all night long, or linens collectors slamming the door open early in the morning. Ah, home.

We still have a not-so-healthy child on our hands. Ezra has only the beginnings of an immune system and remains extremely susceptible to infection. His counts have been low lately and dependent on the drug that stimulates neutrophils. He is also still in pain from his stomach and legs. He remains on pain medication and the hope is once we are settled at home, the pain will begin to subside and we can wean him off the pain meds. 

Ezra will be watched very closely, so closely that we are going back to the hospital tomorrow for a counts check and any necessary meds. Then we will be at clinic at least three times a week. At the first sign of fever or any other issue, he will be re-admitted. Hectic, but we'll take anything as long as we can sleep in our own beds! 

We are grateful to the doctors who have successfully gotten Ezra this far and to the fantastic nurses of M9. Ezra's nurses can best be described as caring, compassionate and creative, with a sprinkle of silliness. They did an amazing job caring for Ezra last year, but this time around, the care was even more seamless because they knew Ezra and his particular ways. They got him (and us) through very tough days in the best possible ways and even made him laugh. The fact that they clearly earned Ezra's trust says it all. We hope to see you again only on the outpatient side!

Last year our homecoming was filled with fear and disappointment as we knew the transplant did not go well. This time, we are allowing ourselves a little bit of hope that things will continue to go well, and in the upcoming months we will see new healthy T cells. As we were sitting in traffic on the FDR on the way home, Ezra was chatting away about all the landmarks he loves to look at during our trips back and forth to the hospital, and he started talking about the bat outside Yankees Stadium. For the first time, we thought maybe, just maybe, he will get to go to a baseball game in the future. Maybe not this year, but it no longer feels like never.

We will continue to keep updating as we enter the next phase of this very long journey. Please continue to pray that Ezra remains infection free, that no GVHD develops, and that his new immune system continues to grow. Thank you to everyone for your support - you have carried us through these dreadful days and we know you are behind us as we continue the fight for Ezra's cure.

Tuesday, September 17, 2013

Days +22 to +25: Baby Steps

The past few days have been filled with more ups and downs. Last Friday night, the transplant team decided to stop his IV nutrition, which is ultimately a good thing because Ezra has to be eating and drinking on his own in order to go home. The transition to oral intake, however, is difficult and there is a lot of pressure for him to do a lot of drinking (the medical goal is way more than you would expect for a 4 year old) and eating when he still doesn't feel well. The weekend was very rough, and although Ezra was trying, his stomach did not seem to be ready to return to eating and drinking. 

Thankfully, yesterday he seemed to have turned a corner and was able to eat small amounts of food and keep it down. He has also been drinking as much as he can. Hopefully, we are on the way to getting back to a normal diet, as long as that tummy cooperates. Always the trooper, always the fighter.

Ezra's counts are still bouncing around quite a bit. We understand that this is normal at this stage, but it still makes us nervous. Ezra is still very early in this process and we're in it for the long run, but given our prior experience we are grasping for as much reassurance as possible.

We're feeling some sadness that Ezra will be missing sukkot this year. He loves being outside in our sukkah. We are just hoping that this is the last sukkot spent in the hospital.

September is childhood cancer awareness month, and the subject has been on our minds. While Sloan treats diseases of many different types, the majority of patients are cancer patients. Sometimes it is so crowded here that you start to think that every child has cancer. Certainly in the abnormal world we live in, we see more sick children than healthy ones. We have witnessed miracles happening here, and we have seen the devastation caused by pediatric cancer. When a medical code is called for the Peds floor, our hearts sink and we try to pretend that we don't hear the doctors and nurses running down the hall and the machines ringing, and we try to think that everything is ok, when really nothing is.

Some of you may know the shocking statistic that only 4% of federal cancer funding goes to pediatric cancers. Children aren't just mini adults and shouldn't be treated that way. Their bodies react differently and treatments should be specific to pediatric cancer, and not just shrunk down versions of treatments for adults. There are many excellent charities that fund pediatric cancer research. We don't have a favorite one, but certainly Sloan-Kettering is one of the places making great strides in the treatment of pediatric cancer.

One of the many things we have never figured out about this place is why there are only plastic spoons in the pantry. You can certainly get utensils from food service, but many families store food in the pantry refrigerators for their child or themselves. It is obviously very difficult to prepare food with just a spoon. And when your sick child wants something to eat pronto, you don't want to wait on food service. So, we decided to take matters into our own hands and bought a case of 1000 individually wrapped plastic forks from Amazon and have secretly deposited a batch in the pantry and will continue to refill. Our little contribution to making life slightly easier around here. Shhhh...don't tell!

Wishing everyone a chag sameach!

Friday, September 13, 2013

Days +19 to +21: Ups and Downs

As we start week 3 post-transplant and as Yom Kippur is upon us, we are feeling so much gratitude. We are thankful that, so far, transplant number two is going as well as we could ask for at this point. We are also so grateful for all the family, friends and complete strangers who have been supporting us through this journey and keeping us strong so that we can be strong for Ezra. All of the delicious meals and special treats delivered to us, the fun gifts for Ezra, and the messages and prayers for better days and good health are always what puts a smile on our faces and helps us to stay positive. So thank you all so very much.

The focus of this week has been re-introducing food and drink as part of Ezra's life. It seems like it is easy to forget about food when you don't feel well and your body gets nutrition support intravenously. Ezra is very slowly trying more bites of food in small amounts. He is definitely scared that eating will make him throw up, plus he is still having stomach pain, so eating is no easy feat at this point. He can take his time as long as we keep taking baby steps forward.

Ezra's counts have been bouncing around quite a bit. He has some days where his WBC is low, although his neutrophils have remained in the normal range. When his counts are low, he has been receiving a dose of a drug that stimulates neutrophil production because the doctors want to keep his counts on the higher end at this point to keep him protected. The only downside of that drug is that it causes Ezra to have bone pain, which in turn means that he needs more pain meds. We need to start weaning him off the pain medication, but haven't been able to make much progress.

The other issue that has cropped up is that he is having diarrhea again. So far the tests are coming back negative for any bacteria, parasites, etc. For now, the belief is that the diarrhea is likely from a combination of the re-introduction of food and possibly withdrawal symptoms from the small amount of weaning we have done on the pain meds. The plan is to give him more time and see what happens. 

The one area of definite improvement is in Ezra's energy. He has been more active and playful the past few days. He has been walking around more and even had a dance party (check Ezra's Facebook page for a video clip He is also working hard at PT and OT to regain some strength. 

G'mar chatima tova!

Tuesday, September 10, 2013

Days +16 to +18: The Hard Work of Healing

Each day we have been seeing a little more improvement in how Ezra feels. His biggest complaints are still stomach and bone pain. Today he was the most playful he has been since we started this process. It is so wonderful to see his personality coming back (and it's more fun too!). He had not been willing to participate in the services and activities available here for the kids when he was feeling so sick, but today he finally allowed the music therapists to come in and jam. 

Ezra's counts have continued to be strong. The transplant team's focus has definitely shifted toward what has to be accomplished in order for Ezra to be discharged. Several medications have been stopped or are being administered less frequently. The pump is slowly decreasing in size. We also started giving one medication orally. So far, Ezra is taking it like a champ. 

For Ezra, the big challenge will be learning to eat and drink again. He needs  to be eating and drinking fairly normally before discharge can happen. He is still on IV nutrition. Once he is able to eat and drink a little on his own, they will stop the TPN, and then hopefully his appetite will kick in. Chemo affects the taste buds, and we can tell that foods taste and smell differently to him. He also says he is afraid to eat because it will make him throw up. We are starting very slowly with this process. Small bites of chicken soup have gone down ok so far and we will go from there.

We had a short and furry visitor this morning. Believe it or not, the hospital uses beagles to sniff out bed bugs, mites, and other nasty stuff. We were shocked that a dog is allowed in the isolation rooms, but apparently it is worth it to have a beagle's expert sniffing. Ezra slept through the visit and we were glad the cleaning staff came by right after our cute, but not-so-sanitary visitor left. 

We are praying that things continue on the right track. To think that discharge might be in the near future seems too good to be true. We're trying to not think ahead too far because we know things can change in a flash. We are just taking each day as it comes and hoping the next will be better. 

Saturday, September 7, 2013

Days +12 to +15: New Year, New Life

First piece of good news: Ezra officially engrafted as of Thursday. The first day of neutrophils over .5 is considered to be the day of engraftment, so Ezra engrafted on Day +11, which happens to be the exact day the doctors predicted based on the size of his graft. Amazing. Ezra's first failed transplant took about 35 days to engraft. A world of difference this time around.

Second glorious piece of news: the new cells are 100% donor! 100, 100, 100! The chimerism test results came back quicker than expected. Tremendous relief and tears of joy. A moment we will always remember. Let it blot out the memory from last year of devastating news. New year, new life. Welcome donor cells. Please don't ever leave!

We wish we could thank Ezra's miracle donor - the reason this is all happening. The rules require that we wait one year before contact and then only if both donor and recipient mutually agree. What a gift she has given us. The gift of hope; the gift of life for Ezra and for us all. For now, we will just have to send our gratitude out into the world and hope she somehow hears us.

We know that there is so much left to this journey. The most important type of cell for Ezra's condition are T cells, and those cells won't begin to make an appearance until 4 to 6 months from now. Those are the cells that need to be donor cells in order for Ezra to be cured. Even though he is all donor now, the T cells could still possibly be mixed between Ezra and donor, so that is something that will continue to worry us. Ultimately, Ezra's immune system has to completely reconstitute and have the ability to make antibodies, which could take a year or more.

This process feels like a marathon with hurdles every few miles that need to be overcome to reach that far off finish line. For now, we rejoice in the hurdles that Ezra has soared over in this race for a cure.

Best of all, we are finally starting to see some small improvements in how Ezra feels. The holiday began with a fever scare. Ezra's fever was not going away and the doctors were getting very concerned. Ezra was sent off for a CT scan to check for pneumonia and other signs of infection. The next step if things didn't improve was to pull out his central line in case that was the cause of infection. Panic time. Thankfully, his fever started to go down and he has been fever free for three days now. 

We have also seen glimpses of his personality coming back. It's like watching your child be reborn. The little chatterbox is slowly appearing again. Yesterday, he wouldn't let the doctor leave the room until he told him about every rocket ever created. And after his CT scan, the doctor came in to ask if Ezra was smiling during the scan because it looked that way in that results. No, he wasn't smiling - he was pretending to snore because the technician had told him to close his eyes. This child never ceases to amaze.

The focus right now is getting Ezra to a place of better health. Intense stomach and bone pain are his biggest issues right now. He needs to do a lot of healing, but we're confident that we will get him there soon enough.

So wherever you may be tonight, raise a glass and toast to Ezra's good news and join us in hoping for better days ahead in the new year and years to come.

Tuesday, September 3, 2013

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!

Sunday, September 1, 2013

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.