Wednesday, April 27, 2011
Tuesday, April 26, 2011
This was one of our worst hospital stays yet. Not only because it was over a holiday weekend and we were missing home but because of the musical rooms/roommate game that went on at the hospital.
When we arrived on the floor we got settled in a room with a younger roommate. We started to get comfortable when we were told that we needed to move to the room next door.
Off we went to the new room, with an older roommate. This boy was recently diagnosed and just began treatment so his mother and I had a good talk. Later that afternoon the boy was discharged and we had the room to ourselves.
Sunday morning at 4am the nurses started moving a crib into the room. An hour later they came back and switched it to a bed. At 6am we got our new roommate. We were a little grouchy that day due to a disrupted sleep. By Saturday night that boy was able to go home and we were thrilled at the thought of the room to ourselves for the night.
Monday morning at 2am our new roommates arrived...with gusto! Beds were slammed into walls as they tried to maneuver in. Soon enough the family was asleep but both parents snored like freight trains. Needless to say, little sleep was gotten that night and we were so happy to be able to leave the hospital at 2pm!
I don't know why the hospital arranges rooms like this and know that it is no one's fault but the systems but I am praying and hoping that our next 4 day hospital stays sees us with our own private room. It makes the stay 100% more comfortable.
Jacob is doing well. No nausea or other issues except his Hemoglobin was once again low so he needed another blood transfusion yesterday morning. That has happened every time he has received this cocktail of drugs so I suppose it is to be expected with the next two of these cocktails that he receives. He was able to go on two Easter egg hunts at the hospital and spent several hours in the playroom making pictures and crafts for his siblings (he even made one for the dog!).
We will be coloring eggs later today and having our Easter tomorrow or Thursday.
We slept for close to 12 hours last night...we were just that tired!
It's good to be home again!
Wednesday, April 20, 2011
Other parts have been through the filter in my brain and come back with a message.
December 16, 2010 will always be a date that I remember. It was that morning that I was dressing Jacob and noticed the lump on his left abdomen. It was hard and large and I felt my throat tighten as I realized that something was in there. I immediately called the doctor office and they were able to get him in later that afternoon.
We went about our normal routine, even going to Jacob's speech therapy appointment that day. I remember sitting in the waiting room of speech and the thought "Better enjoy these moments before knowing" popped into my mind. I just knew it was something bad. I was jittery when we arrived home from speech so I made the kids lunch and went outside to shovel the sidewalk. I took an extra long time, scooping the snow that lay on the ground as the flakes coming down drifted around me. It was a peaceful time, the sounds around me muffled by the falling snow. It felt as though I was in a comforting cocoon.
A few hours later I dropped Joe and Becca off at my parent's house and Jacob and I continued on to the doctor's office. The doctor walked in and had Jacob lay on the exam table. He laid his hands on Jacob's abdomen where I pointed; soon after he touched it his hands held still for a moment. To me, it was sign language for "wow". I felt that he purposefully didn't look at me at that moment because I would have been able to read it on his face.
He probed and prodded and asked questions, one of them being "When was the last time he went to the bathroom?" I let out a breath of relief and thought maybe it's just impacted bowls!! but a few moments later he threw me the c bomb. "Sometimes kids get a tumor on their kidney called a Wilm's Tumor. It's the only thing that I can think it could be."
My face felt like it was on fire and the floor all of a sudden felt unsteady. I knew I was going to throw up. I whipped my coat off and sat down in one of the chairs in the room...hearing him explain Wilm's tumor but not catching a word of it as I tried to keep from throwing up or passing out (or both).
A few moments later he left the room to schedule a CT scan for the next morning. Jacob hopped off the table and sat next to me on the chairs. I smiled at him but didn't speak as I was in shell shock.
Jacob sensed my worry and tried to change the atmosphere in the room by pointing at things. "What's that?", he asked as he pointed to a diagram on the wall of blocked arteries. Next he moved to the skeleton foot on the wall "What's that?" I explained each of them to him, trying to make sure my voice didn't sound as panicky as I felt.
Jacob pointed to the picture behind us, "What does that say?". It was one of those motivational posters that you often see in offices.
"Courage", I read out loud to him.
Jacob asks, "What does that mean?"
"To be brave."
He continued on around the room asking what this or that was. He came back to the poster two or three more times. Each time he asked me again what it said, and each time I responded with the answer.
That day began our journey and how fitting that the answer of how to get through it was right there in that room. "Courage". Jacob has had more courage throughout this journey than I could ever muster. He has taught me the true meaning of courage. Big things truly do come in small packages!
Tuesday, April 19, 2011
This isn't the first time food control comes up. I've heard about extra taxes for soda or other unhealthy foods. What about the crazy lawsuits against fast food places where people claim they didn't realize overeating this type of food would make them obese and unhealthy.
Monday, April 18, 2011
My bad mood was tripled by the fact that I am hormonal this week and that I know that another 4 day hospital stay is coming up and I dread them. Will we be in a double room with a bearable or unbearable roommate? What food should I bring to eat? Why is the parking so expensive? Should I plan our Easter celebration to happen before we leave or after? Why is my house always a mess?! These are all the thoughts that swirl through my head this week.
And then God blessed us with more angels. A neighbor drops off a ham for our Easter celebration. Easter balloons are delivered to the door for the kids, without a name of who ordered them. My day turned completely around because of those two acts of kindness today. It made me feel less alone.
Don't get me wrong, we have been blessed by the kindness of people throughout the journey. We have been supported by our friends, neighbors, and complete strangers. But as a friend who's daughter recently went through the battle of leukemia (and is a healthy little girl once again!) told me at the beginning of this battle, "You will come to find out who your true friends are by the ones who stick by you."
We are in the middle of our journey. It's a time when people go back to their own lives and expect you to have the hang of it now. We do, for the most part. To be honest, it's a lonely place to be though. Somewhat like limbo...watching other people go about their own life and seeing parts of ours on standstill.
So to be reminded that we are still surrounded by love and care is much needed at times like these. It's not about the things that we are given, but rather the thought that counts. Knowing that we are not forgotten is the biggest thing to us right now. A note from a friend or stranger in the mailbox, a question from the bank teller asking how Jacob is doing, a woman shopping at our garage sale who handed Jacob a quarter and told him he could make a killing if he charged for his smiles because they are so beautiful. All these little things say "I care."Families facing cancer aren't the only ones that need this reminder. Everyone needs to be reminded that they are thought of and cared for. Elderly persons and shut-ins. A new mother who is feeling overwhelmed. A widow. A teenager who is going through problems. Everyone. It's a reason why Chemo Angels is so close to my heart. The little packages that arrive in the mail for Jacob thrill him. Not because of the items inside (though that's part of the fun!) but because he is reminded that he is special and thought of. And when the hospital visits get old, the needle pokes leave bruises on his arms, his blood counts drop and wear him down just a little bit more each time is when he really needs that reminder. It's not just his chemo angels, of course, I have to send a huge shout out to MJF friends and TUA, along with several other people. Please let someone in your life that might need a little lift know how special they are this week. Remember, sometimes the smallest act of kindness can turn some one's whole day around.
Saturday, April 16, 2011
We had been planning a garage sale for weeks and planned to have it the 14th, 15th, and 16th of April. My mom ran several ads in newspapers and all was going well until we got closer to the big day and saw the weather reports. Rain, wind, and even snow was fore casted for each of those days. The day before, Wednesday, was looking to turn out beautifully so we made a quick decision to move the sale one day forward. Which means Tuesday found me rushing around trying to finish up the prices and move all the boxes to my parent's house.
We are all so glad that we did switch days. It turned out to be a beautiful warm sunny day...the perfect weather for a garage sale. Even though we were not advertised for Wednesday we set signs up all over town and had the biggest turn out we ever have had! From 8am until 7pm we literally only had a time of one minute when there was not someone shopping at the sale. Items flew off the shelves.
Thursday dawned somewhat nice so we decided to set up the sale again. Within 30 minutes of starting setup the winds were blowing like crazy and the temperatures continued to drop. The customer flow was slow so by noon we posted 1/2 Price signs and posted it on an online garage sale community board and had several hoards of people show up for that. It helped us clear out a lot before we got tired of the cold and wind and started to pack up around 1:30pm.
Out of the nine boxes and several large items I brought I only had to take two boxes home. I listed several items on ThredUp and have had 3 of the 4 boxes picked and sent already. I have one box left and will save that for the next fall garage sale as it is all fall items. It was a good way to get rid of things and make a little money at the same time...but it sure is tiring!
Yesterday Jacob had Vincristine again. Luckily, he did not need blood so we were able to get in and out of the hospital in two hours (but with the driving we were still gone for six hours). On the way home I stopped at a Super Target to pick up some Easter supplies. Jacob has a four day hospital stay this coming weekend which means the poor boy not only missed Christmas at home but will also be missing Easter. We are planning to have Easter a little early this year so that the kids can still enjoy it with their brother at home.
With several days away from the house I have lots that needs to be caught up on. Overdue library books need returned, stamps need to be picked up at the post office, grocery shopping needs to be planned and done, the laundry is beyond piled up, the house needs a through cleaning. I suppose I should get started on that...
Tuesday, April 12, 2011
That got me to thinking, "Do you or your husband have rules about bars? Are they acceptable/unacceptable in your family?"
We have no rules about bars as it's never been an issue for us. Neither Ben nor I have any desire to go to one. Ben went occasionally when he was single, but preferred to just get together with friends at home to socialize. We went together once, with several people from work, but found the environment to be awkward. People were either awfully drunk and acting stupid or flirting with one another (and even sitting on each others laps), even when married. The whole bar atmosphere seems to be a place to get attention or pick someone up. Your thoughts?
Monday, April 11, 2011
When I wasn't outside I was inside enjoying the breeze wafting in through the open windows, getting some spring cleaning done, pricing boxes of things for our spring garage sale, and filling up several more boxes of things that I will need to price today. I am sick of tired of cleaning up little pieces of clutter ALL DAY LONG and am filling boxes to get rid of it all. I have nine big boxes of things already and hope to fill a couple more before Thursday. I am also hoping that the weather doesn't turn out to be as bad as it sounds like it will be. Keeping my fingers crossed because our sales are more of a yard sale so if it rains we don't open.
Jacob is doing good. On Friday he reached the HALF WAY POINT! 10 chemo treatments down, 10 more to go! It was a milestone to be sure so I let him choose what he wanted for supper and he chose KFC, which he happily munched on when we arrived home from a long day at the hospital. We had went in for Vincristine (which is administered in less than a minute, though the doctor checks and blood draws make it take about an hour or two) but he needed a blood transfusion due to low Hemoglobin levels (this was the sixth transfusion for him) so we were there for another six hours. Yep, all of the kids were along again this time. Luckily, I had brought my 14 year old sister along so she was able to keep Becca and Joe somewhat entertained. I think I've finally learned to totally accept the unexpected at the hospital on these "short" visits and will try not to bring the other two along with us from now on because it makes the trip just a tad bit more stressful than it needs to be.
Besides the lower Hemoglobin levels Jacob is doing well. His energy is less but he still feels good, which is what really matters. Let's hope that the next ten treatments treat him as kindly.
I've started to work in my garden but am disappointed that something has already dug large holes where we planted the radish seeds. I need to replant and hope that whatever it is leaves it alone this time. My rhubarb grows bigger by the day and I see some of my flowers peeking their heads above ground, specifically the peonies. Robins abound throughout our yard so it is a sure sign that spring has arrived, even though our temperatures are expected to drop back into the low 40's by the end of the week (another sign of a not so good day for our upcoming garage sale).
In other words, life goes on despite cancer. I'm not going to lie and say that sometimes we forget about cancer, because we don't. Whether we want it there or not, it is always at the forefront of our thoughts. There is still fear and sadness. Often times I find myself just staring at Jacob - whether he is at play, sitting on the couch, asleep, or getting a procedure done and I feel my heart breaking into a million pieces all over again. The good thing is that there are still moments of joy in between those times that mend my heart back together again. Those are the moments I savor.
Wednesday, April 6, 2011
It made me realize, once again, how food can affect your mood. If you eat garbage, you feel it. If you eat greasy foods, you feel it. If you eat healthy...you feel it.
I woke up on the right side of the day today (I really think that the weather affects me greatly...it's sunny today so I have energy and a good mood). I started the day with my bowl of steel cut oats.
Today I had it with maple syrup, diced apples, walnuts, and cinnamon. Delicious!
I found that at our local grocery store the Bob's Red Mill steel cut oatmeal is less expensive than the Quaker steel cut oatmeal. I've been buying the Bob's Red Mill and pouring it into the Quaker box since the Red Mill comes in bagged form.
For lunch I had a large salad of baby mixed greens with olives, chick peas, and sliced almonds. I did pour a little french dressing on it but once that bottle is used up I will be making my own simple salad dressing (any favorite recipes?!). It was very satisfying. Tonight I plan to make BBQ chicken with vegetables and more salad. Strawberries are on sale at the grocery store this week for 99 cents a lb. so we will be purchasing several packages of them - they are a favorite in this house!
It is beautiful weather today so I have been washing floors, hanging clothes on the line, and now it's time to take a walk with the kids. Hope your day is as bright and fresh as ours.
Tuesday, April 5, 2011
Monday, April 4, 2011
On Saturday he arrived home to a package from his Angel Jackie as well as a box of seashells from his Angel Beth, who picked them up along with her children on a family vacation to the beach. Her daughter also spelled Jacob's name out in the sand with seashells and they sent those pictures along.
It was such a neat idea and made him feel special, knowing that his name was spelled out somewhere in Florida.
Saturday, April 2, 2011
Jacob is feeling good today. He perks right up when we arrive home and gets right back into the groove of things. 9 chemo sessions down, 11 more to go. The next two weeks will be once weekly out-patient treatments and our next overnight stay (4 days, actually) will be over the Easter weekend. Yes, Jacob not only missed Christmas at home but now Easter. It sounds like the hospital will have some activities and we will tell the Easter Bunny to wait until we get home to pay us a visit.
This stay at the hospital was an emotional one for me. I'm not sure why. Maybe it's because I was tired upon arriving due to the fact that I was out late the night before with Joe at the ER because he had a crayon piece stuck up his nose.
Maybe it's because when we arrived at our room in the hospital our roommate was a baby (around 9-10 months old) and was basically alone for his whole stay besides a 2 hour visit from his family. This baby played in the crib by himself and drank his bottle and went to sleep alone. He was beyond good for the 24 hours we were there...too good...as though he is used to being alone. It was heartbreaking.
It could be that when I went to get lunch there was an ambulance crew wheeling in an elderly woman who reminded me so much of my Grandma that I started crying while walking to the cafeteria.
Or realizing how traumatizing these hospital wards can be. It reminds me of a wounded soldiers unit - these kids are fighting for their lives and watching them is like watching the walking wounded. Their battle scars are present for all to see. It's a place where these kids shouldn't have to be. I had to hold back tears in the playroom last night because while the kids were having fun the war was all too real in that room.
On a happy note, Jacob's ECHO looks good. We are back home. The weather is warming up. For those I am thankful.