Neutropenia

Neutropenia occurs when the neutrophil count falls below 1,000 cells per microliter of blood, the risk of infection increases somewhat; when it falls below 500 cells per microliter, the risk of infection increases greatly. Without the key defense provided by neutrophils, people have problems controlling infections. In other words, Sam can get really sick when he's neutropenic!

Given that we have already experienced more low-grade fevers and two unscheduled trips to hospital, I get very jumpy when Sam's blood counts drop. Researching (as I tend to do), I have discovered that the neutropenic diet is not all that it is cracked up to be. Studies ahve shown there is not a need to be ultra-concervative with the diet when neutropenic.

Sam cannot eat raw fruit and veg when neutropenic but we have yet to get him to eat anything! My little tough guy, the one who could climb up my body with his amazing strength, now has the thinnest arms and legs and cannot stand for more than a few minutes.

The problem is, do I give him things that are not particularly healthy (mac and cheese, pizza, etc) which he will eat a little, or force the healthy stuff and hope? Sam was always a great eater and juggling this issue is hard. Today he ate three yogurts, the Spongebob type, not my preferred organic ones; some mac and cheese, again not organic as he only wants the fun ones with shapes; and a cup of water! He loves to eat out but that is impossible with low counts.

Once again I find myself having to go with the 'what works for now' mentality...get ANY food into him and hope we can go back to more healthy stuff soon. I am all geared for cancer fighting veg and organic, toxic free fare, I just have to wait a while.

ER !

So things can cause little hiccups! Being that it is flu season, I should not have been so surprised to find out Sammy needs Tamiflu and a little extra TLC as he has the symptoms...but no actual flu yet! Here's how we found out:
Due to the rash, Sammy had visited the clinic at CHAM on Wednesday instead of waiting for Thursday. I love how they don't wait around :) No issues with the rash and blood counts were good. Wednesday night we had fever but it was very low grade. The doctor on call (Dr. Moody) who I feel very comfortable with, felt we could stay home but needed to keep checking Sam's temperature and call if it increased.

Thursday was low key and no fever...until about 4pm when Brian, being the amazing daddy he is, noticed a change in Sam and took his temp. He had spiked a fever which could not be ignored and we called CHAM...time to go to the ER! I had just arrived back from work, so changed into 'civies' and packed for admission, computer and video games included.

Sam and I walked into the ER...it was like being in a scene from a movie...a sea of people, all sick and desperate to be seen, the room was filled to overflowing. Panicking due to Sam's weakened immune system, my eyes only saw germs...EVERYWHERE! I had to get him away from this deadly place. A nurse cam out of the triage booth and I explained who Sam was and that he was a Hemonc (hematology and oncology)patient...he was whizzed through the door faster than I could blink!

Sam was very scared of the ER. It was dark, being in the basement of the hospital, and there was a sense of unrest and almost a coldness to it. The staff were okay, but very rushed and we both really missed our 'friends' on the ninth floor. We were very much just faces in the crowd, no kind words or even comments on how well Sam was doing..considering. Just basic coverage to ensure he was treated medically.

Sometimes you really want to punch someone when you are feeling totally fed-up with the lot you are given...I met that person in the ER. One of the nurses was curt in his manner and did not inspire confidence in his ability due to minor things such as dropping equipment. He was the 'chosen one' putting Sam's line into his port and although I had quite clearly stated how important it was that this be handled carefully so Sam was not any more scared than he needed to be, the nurse proceeded to hover the (large) needle right in front of Sam's eyes for an eternity. I had to think quickly and managed to divert Sam's attention by discussing games to buy for the DS...two new games were owed before the line was attached.

The relationship between us and the nurse worsened as the hours went on. I had been very pleased to see Dr. Roth drop by and he assured us that the line could stay attached, as Sam needed to visit the clinic the next day (antibiotics were administered and a nose-swap came back clear so he did not have to be admitted). The nurse, however, was ranting around the floor saying his name was on the line too and he wanted the policy of removing it to be upheld. The ER doctor and our good ol' Dr. Roth both agreed it could stay in, but we were forced to wait an additional two hours while the debate was resolved (including a phone call to Dr. Roth - which I insisted on). His attitude was awful each time I approached him for information, basically treating me like a major pain in the butt! I really wanted to take my anger out on this guy!

Five O'clock am rolled by and we finally made our way out of the ER. In seven hours Sam would be back in CHAM but this time,thankfully, in the caring arms of the clinic nurses. Brian let me sleep while he ferried Jack to school and Sam to the clinic that afternoon. Sam had flu-like symptoms and was put on Tamiflu as a precaution. I need Valium at the very least!

The Rash

The rash continues to get worse but the doctors saw it in the clinic and continue to monitor by phone. Apparently it is not usual and they don't really know what it is. I am getting tired of Sammy having to go through unusual things with this treatment. We were up again all night with itching and discomfort. He is bright red and now has small white heads on some of the red spots around his neck.

Normal..Kind Of!

Sam completed his big dose of chemo at the hospital. He tolerated the high dose Methotrexate well and also started oral 6 mercaptopurine. Saturday night was a disaster as he had bad pains in his belly...enough for him to ask to see the doctor (this is a big flag as he always asks that the doctors go away)! Sammy also had vomiting and the pain grew so bad and X ray was ordered. Finally, after being up all night, the blood work could not be collected as his line was blocked!!! What fun :)

Sunday, Brian came in to take over so I could take Jack home. Jack and I went out to dinner at the local diner and had fun just begin together. We really did have a good conversation about the stuff kids like. Sam was also much more upbeat when I left so I relaxed and let myself indulge in some Jack time.

Monday...good news. Sam's body had got rid of enough Methotrexate for him to come off the Leucovorine, (the antidote for the methotrexate) and come home. Nana Susie took Jack home after school so he could watch the 4:00 Yankee game (they lost) and I could go to CHAM to help get Sam home. The port had not been de-accessed so I walked in the room to a screaming Sam, terrified of the sticky coming off then the needle being taken out. (Reasonable fears if you ask me!) I persuaded him to let me soak it with the magic oil and then asked the nurses to pretend to cover it in the numbing cream to stop it the needle removal being painful. Sammy ended up being the main person gently unsticking the HUGE dressing with the magic un-sticky wipes. Finally the nurse, Lindsey, who had been very patient, leaped in and out it all came. Sam announced he had been REALLY scared but it actually didn't hurt. I wish he would remember that next time.

The evening consisted of the four of us and Nana Susie at home eating Chinese and Japanese while watching the defeat of the Yankees. Sam looked good, just an itchy head and mild rash on his neck, Jack had a stinky cold, Brian was exhausted and I was in need of sleep but loving having everyone home.

Today the rash developed to all over Sam's torso and he has red raised spots on his lower legs. Dr. Moody, on call, suggested we give Benadryl and go to the clinic Wednesday morning instead of Thursday. Feeling that things were not completely crazy, I actually headed out to dance class for the first time since diagnosis. It was great!!!!!

Co-Stars

While this blog is about Sammy's journey through leukemia, and you get to know my inner-voice (typos and all), there are a few major players in this who are crucial to the story. Brian AKA Daddy, is the 'doer' of the family. He actually gets Sam to be more upbeat than I do and has created a wonderful schedule of rest, play and schoolwork each day. Brian is taking time off work until December and has become the main caretaker. I love how strong he is with it all, especially dealing with my overbearing determination to be in charge of everything even though I'm not there.

Jack is the big brother. He has experienced life-changes through this and has been so strong. I know he misses the time we usually spend together and has had such a disrupted schedule in order to keep Sam as comfortable as possible. It is very hard to meet the needs of both children at this time and we are determined Jack will stay as normal as possible.

Yet bedtimes are now much later (I was a fanatic about getting them enough sleep each night), and Jack even sleeps in my bed so I can be by Sam's bedside all night (they share a room). I am still debating the fairness of this but feel Jack would be worse off being woken up all through the night. Nighttime routines are structured around the meds schedule. Sam insists I give them to him at night so Brian reads to Jack. I then have snuggle time with both boys separately. This gives me time to chat and catch up. Of course it also delays sleep but it is so essential to connect.

Homework is less challenging now - well for us, Jack hates it! Again, Brian tends to do this with him as I am back from work and tending to Sam who plays the sympathy card no end with his need to see Mummy. Activities for both boys have stopped but we want to get Jack back to a sport and to playing his guitar. The leukemia cannot be totally blamed for this as the guitar teacher was unable to come at an early enough time so we need to find a new one. Jack was also torn between football and soccer so we couldn't book him in. It is essential to get these things back in action, however. Sam will go back to golf when the next camp starts in the spring.

"Supersibs" is a wonderful resource for siblings of cancer patients. In fact, signing Jack up for it was the first thing I did after diagnosis. Jack received a letter (mass produced) from Mia Hamm telling him all about how she felt being a sibling of someone with cancer. It really seemed to help him at the time. Periodically, Sipersibs will send Jack a goody bag to help remind him he is special too.

There is also therapy. We are never in the hospital for the Tuesday therapy - one for Sam with other patients, one for Jack with siblings and one for the parents...for me as Brian does not want to go. Although the thought of therapy using up some time we can actually be together worries me, I know it may help us all get through. The commute is too far to CHAM when we are home so we are looking into the Guilda's Club in Westchester.

The biggest help for Jack is his best friend, "M". Even when I haven't seen Jack for a while, he would rather go to M's house to play...a good sign he is doing well. The two boys play so well together and the independent stage Jack has reached will also help.

Being from England has posed problems with staying connected to family from day one, but now it is harder than ever. Because we are twixed and between hospital, neutropenic states, and small windows of 'somewhat normal', we have not been able to have my mum, Nana Haze come over. This is so painful for both of us as she wants, more than anything, to come and look after us, and I need a hug from my mummy! Nana Haze has Lupus which prevents her from being able to leap on a plane and drive herself around, so we are waiting for a time when we are more able to have her stay....fingers crossed for Christmas. I can't imagine how hard it must be to be three thousand miles away when her grandson is so sick...I do know how grateful I am that she has allowed me to take my anger out on her over the phone, snap and moan, and cry when needed. My mummy has been looking after me so well!

Nana Susie and Poppa are the 'on-call' grandparents. They have been woken up at three in the morning to come to Stamford to be with Jack as we rush off to the hospital. They collect, feed and add support as needed and even back-off when required...that sound so harsh but anyone who has faced traumatic times will know that sometimes you just need space to breathe. They do that with love and understanding. Nana Haze also did this when I was so down I told her to stop calling everyday! Parents are amazing at really getting what their children mean from their words...we love our parents so much.

Da family and friends - so many wonderful people who have cooked for us, looked after our pets, helped out with Jack, passed on news so we didn't have to, and supported us though this. Prayers have been said across the world, they are really working. They say it takes a village to raise a child, and we have a network of friends, family, and parents of the children we teach, helping us through this time. Most special of all is the way the children have helped..sending cards, making gifts, our neighborhood kids pooled their own money together to buy Sam some games...their own idea.

So many special people...Sammy is a lucky little boy.

Consolidation I

"Houston, we have landed!" Remission has been achieved. Phew! Thursday went well medically. Sammy's blood counts, platelets and ANC were all fine for the procedure (spinal tap, bone marrow biopsy and intrathecal Methotrexate)and it went by without a glitch. Sam was even much calmer about being put to sleep this time which was a relief. He was scared of the nightmares he had experience last time, so I whispered gently ideas for his next birthday party...Spongebob cake, balloons and fun at "Dino-dig". He later told me he had good dreams.

Having the finger prick was a different story. It is amazing how we humans accept varying degrees of suffering. Sam was mortified to learn his finger had to be pricked to draw blood, and even more upset after watching Mummy demonstrate with her own finger (ouch)! Major histrionics later, we had squeezed a pin-head sized drop of blood from his numbed finger. The look on his face when we told him this was a weekly event was enough to turn me to stone. We quickly changed the subject to things he's more comfortable with such as having meds pushed through his port..see, accepting varying degrees of 'yucky'!

We left the clinic before getting the results back, but later that afternoon we got a call to tell us the bloodwork indicated remission, and that Sam would be admitted Friday for the next phase of treatment. I went into school Friday Morning with the strangest feeling. I dissolved into tears as I told everyone about the remission, and it was partly relief...but also fear of the next treatment...it was going to be happening that day. In hindsight, I am now very pleased as the alternative would be a new treatment plan to get to remission, but I am still shocked at how sad I was as I told everyone the wonderful news.

I am now sitting in room 906 in CHAM. Sam is over half way through his 24 hour High Dose Methotrexate (HDM). This is the big gun! I am still a little afraid, yet calmer now it is happening. Effects won't present for a day or two so I am bracing for those: mouth sores, nausea, vision problems, sore gastro tract..to name a few probable ones. Others we will deal with IF they happen. We are here for about 4 days so the HDM can be administered safely and the rescue med, Leucovorine, given at the right time. Then we will be home and waiting for neutropenia to set in (lack of immune system). We will play it extra safe, avoiding too much contact with others and staying home. This phase lasts for three weeks. Neutropenia is expected to hit around day 14. Once it is over, we can get out a party once more!

Thursday, Friday and Beyond

Thursday is approaching and Sam is being prepared mentally for it. He has been discussing how we should wrap his port when we put the numbing cream on...his preference is cellophane but I think it needs more stick to guarantee effectiveness (he said it still hurt last time). He is very afraid of the needle which inserts the line to the port so I think we are going to have to work hard to convince him to let stick the cellophane down with something. A wonderful neighbor brought us some dressings that her son "D" uses...he has diabetes. Sam talked about how brave he was but was very afraid of the shots "D" has. I had to reassure him that his disease was different while developing an amazing respect got the young man down the street. This does beg the question...why? Why do so many children have to endure so much?

Sam will be admitted on Friday...this I am surprised about as I was under the impression he would get a break before the next blasting of chemo. Over the past few days I have really swotted up on the next phase and am pretty sure it part of the chemo should not be given until in remission. I have a long list of questions for the doctor tomorrow:

Induction –Day 32 Questions:

1. When do we know the MRD (Minimal Residual Disease)?

2. Does the 5 year timing start from the day Sam is in remission?

3. If MRD is good – is the protocol changed to reduce side affects especially HDM?

Consolidation 1 Questions:

1. Will Sam be admitted for the full 3 weeks?

2. High Dose Methotrexate – is Leucovorin being administered as per the Study protocol? It is not on Sam’s roadmap.

3. Can Sam take Kidzime?

4. If admitted for long time, Sam will not eat. Can there be supplements in IV or other ways. He lost so much weight before.

I will keep you all posted on the answers to these and the thousand more we will have as we go though the next couple of days.

Last night we were talking about various things and I asked Sam what he wanted to be when he grew up. His reply was, "normal'!

Yet life is not 'normal' for anyone....we all have our battles, joys and experiences what shape us into remarkable (and sometimes not so remarkable) people. Being normal is going though stuff and learning how to cope with it. While I would do anything to take this experience away from Sam, I know he will grow so much from it and be an amazing young man when he's older.