Shoes

Here is a poem I just read on a cancer website:
SHOES
I am wearing a pair of shoes.
They are ugly shoes.Uncomfortable shoes.I
hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author Unknown

Amazing!

Today was the best day since diagnosis. Brian had messaged me during the day to tell me Sammy was eating and more lively. I was delighted to hear he had eaten a waffle and then asked for another one! When Jack and I came home, it was like seeing my old Sam back again, just with much thinner hair :)

Sam was initially asleep when we arrive back but it was late due to a staff meeting so Brian woke him up to have his medicine. Brian was concerned that Sam's mood would be bad after the long nap, but was very surprised when Sam , covering his face with his blanket, threw it off to reveal he was pulling a funny face and waving his hands at his ears! He was having fun!

The rest of the evening consisted of Sam, (Jack played at M's (best friend)), getting down to some time with Mummy, putting more thank you cards in envelopes, looking online for his Christmas wish list, walking back and forth around the house doing various 'clean ups' and helping Mummy, and even eating a FULL bowel of pasta and tomato sauce followed by a big dollop of icecream!!!!! I was the happiest I have been in ages.

Sam helped to clear the table, then showed me his sticker book he created with Spongebob stickers. Each page had the Spongebob characters doing something that told a story...it was very clever. Sam then retold his story as his brother came and sat with us to listen.

Teeth brushing was fairly easy, but Sam did mention sores in his mouth, so we were extra careful. Then we had to clean up all the food that was left from diner on his cheeks and chin...good to see again. Jack, during the toothbrushing, was reading his book from the library aloud to us...it was all very "family together"!

Upstairs, I had snuggle time with Sam! The first in over a week. Although I have been too sick to go close, I always offered to stay in the other bed and talk, but Sam always said he was too tired and wanted to be left alone. Tonight, he was a veritable chatterbox, as I lay beside him soaking in every moment. He told me all about the game he invented, "Ghost Numbers", where he draws a number, folds the paper and I have to try to guess the number and draw it exactly the same as he did. The challenge goes up to one million!!! This conversation went on a long time with an animated Sammy telling me all the rules. It then turned into a whole role playing game where I had to find the trophy hidden in treasure chest in the cave. His imagination was running wild.

Snuggling with Jack, who still sleeps in our bed so Sammy does not wake him or catch anything, we played a game of Guess the Number and I lost 3 to 0. Many snuggles later, I kissed both boys goodnight and went downstairs. Within about fifteen minutes, Sam was down, asking for a drink of apple juice...he hasn't wanted that for weeks. I obliged willingly, panicking a little about the teeth, but feeling I could justify it totally. We then snuggled on the couch, ostensibly for a few minutes, when Sam asked if he could draw. He was wide awake, hyper almost compared to two days ago, and I knew he wasn't about to fall asleep upstairs. We settled down to drawing at the dinning room table and I felt transported back in time. There was Sam, drawing a picture with his usual intent look and his tongue poking out as it did when he was concentrating. The photos are the results of the drawing activity...I just had to capture this moment. The Spongebob was the one he saw online earlier that evening; he even drew the back of him on the back of the paper.

Finally I said it was time for bed...I didn't want to push it even though I could have been there all night. Sam asked if he could write a list of things he wanted to do the next day..procrastinator! I spelled out the letters for him as he wrote his list. It is included in the pictures. He was very good at writing considering he's only had 3 days of Kindergarten!

By 10:03, Sammy was heading up the stairs to bed...I was in a state of bliss, knowing that I need to cherish these moments. We lay in bed together briefly as I gave him time to finish asking questions and end the night without rush. I then kissed his forehead, whispered Ti amo, our usual goodnight , and went down stars with a smile. I know this is not going to last, but I know know it can happen...something I thought I would never see again just the other night. It has given me more confidence and hope.

A Better Day

So I guess I was feeling a little sorry for myself yesterday! I don't blame me, I also don't doubt it will happen many more times too. But today is a better day; Sammy was smiling and even playing games in the bath..giving me HUGE doses of pretend medicine...WITHOUT the chocolate syrup...yuck! I smiled a lot today.

First of all, being off with bronchitis gave me the chance to keep Jack off too and take him to be checked out. We had a great time, despite him also having bronchitis, and I found myself marveling at how handsome and grown up he was becoming. I reveled in having a chance just to stare at my oldest child and soak him in. We also purchased some silver ballet shoes and green glitter for his Halloween costume...he's going to be Tinkerbell: tutu, wings, tiara and all! We had a great time gluing the glitter all over the shoes. I personally think his choice of costume is an attempt to steal back the limelight a little. I don't blame him, and we are all very excited for him to make his grand entrance on Friday in his class. Now we are both on antibiotics and returning to school tomorrow.

Sammy had a great visit to the clinic with Brian. The latter had written down all the answers to my endless list of questions I sent in with them. Everything was 'normal' for this early stage. It has only been 6 weeks!!!!! He is neutropenic for sure, but his counts are within the 'good' range of low. The good news really picked me up and I felt back to the regular state of 'automatic' mode that has developed in recent weeks.

Sammy was more lively today, meaning he was willing to do more while sitting on the couch. He was very excited to help me, or rather, to independently put the 'thank you' cards together, add the address labels, and write his name in big red marker on the back of every envelope. He got though about 15 cards in all. Quite remarkable as he did all the work himself. I was so happy to be sitting with him, actually nearer than I had dared in the last few days.

Bath time was hilarious. Sam had to soak off the sticky dressing that sealed his unused Num Num cream over his port (he didn't need transfusions so he wasn't accessed). He asked for toys so I brought in some of the things we use for medicine: syringe, measuring cups, larger cups in which we give him his 12 mls of meds 2x per day, and a spoon just like the ones he uses to s-l-o-w-l-e-y sip the liquid concoction (sometimes taking 2 hours). I did not know how it was going to pan out, but Sam immediately announced that I was to get lots of medicine...as you already know!

Sam then announced that he wanted a family dinner and I suggested some ideas...he went for corn, rice and hotdogs. (Brian and I had lamb chops instead.) I needed to go to the local store - Mrs. Greens for organic (I wanted to get back to that) and pick up sundries. While Jack and I were at the store, no longer than 20 minutes, Sam took ALL his medicine!!!!! I hope the bath experience helped him somewhat. I made sure to show him how jealous I was that he got to have chocolate syrup with his medicine :)

Dinner was great, Sam left the couch, and we tucked in. Immediately Sam was upset that he didn't like any of the foods, things he normally enjoys. The only answer was that the medicine was turning his tastebuds and that things would get better soon. Once again, Sammy was eating yogurt..his only food for the last week. I did get him to eat some icecream with a cone, but I ended up eating most of it..yummy!

So Sammy is okay...still afraid of missing Halloween, but we are working hard to keep him from getting another fever. I feel more able to cope again, Brian is glad to have my help back after doing almost everything for two days, and Jack is feeling a bit more like he has our attention. Today is a good day!

Odds

I know people are trying to cheer me up when they talk about the future. Things are going well...always look forward...more chance of being run over by a bus. But right now I feel as though Sammy is standing in front of the bus, and we are all just hoping he is not hit! Leukemia can kill...there, I've said it..and my Sammy has something that could kill him!

Why am I feeling this way? I am angry and sad about how he is closing up. He never ventures from the couch, doesn't eat and can't find the motivation to do much at all. I have just put a whole list of questions together for Brian to take to the clinic tomorrow; I'd go myself but have Bronchitis so can't go near cancer patients. I want this lethargy, loss of appetite and lack of will to be addressed. This I now fear more than the cancer. I see none of the Sammy I know, instead a little old man with skinny legs who shakes as he tries to haul himself up a step.

But he's in remission! Yes, but that means he can start the more intense therapy...the one that will blast every last inch of his being away...leaving nothing for the cancer to come back to. I just feel like it's taking my Sammy away too!

Fun Times - Some Light Relief!

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!