Arm Chair Organizing

One, of the many, difficult things about being at the hospital for so long is wanting to get things done and being unable to do so.

With the start of the school year coming up (tomorrow starts August!) I've had to order our school books from the hospital. I wanted to go through all the curriculum options but with all my catalogs at home and a headache here at the hospital I decided to go with the majority of our books from Rod and Staff as we have been happy with their math. We will still use an assortment of books for science and history but the rest of the curriculum is hopefully on it's way to our mailbox now. In a few weeks we will go shopping for all the school supplies and it won't be long before we are hitting the books once again.

I have plans to make the playroom in our house into Becca's new room with a sewing corner for me. Jacob and Joe (well, Jacob, anyway!) want their room decorated in Star Wars. I see lots of painting, moving around, and organizing in my future. I have some fun paint ideas for Becca's room, thanks to Pinterest.

While we are organizing we will be doing a HUGE decluttering. Moving toys from a large playroom to each child's room will mean much downsizing. Thanks to an upcoming garage sale I think it will help entice the children to let go of some of their things. Mommy is already getting rid of lots. Before leaving for the hospital I filled a corner in the playroom with stuffed boxes for the garage sale. I can't wait to continue to clear out cupboards, drawers, and space in our house. A nice big purge before winter is always needed. I will be updating my progress as it goes.

Before Jacob can arrive home I have to do a through sweep of the house - quite literally. Due to a compressed immune system I will be needing to scrub floors, tubs, toilets, sinks, carpets. I need to wash sheets, carpets, curtains. Dust mini blinds and surface areas. Basically, I have to get the house into tip top shape. I then have to maintain that each and every week until his immune system is back up to par. Fun, fun.

I plan this weeks before I can start any of this...from the chair in the corner of the hospital room.

25 Days and Counting

Today marks 25 days in the hospital and it seems there is no end in sight. Jacob is still slowly being weaned off the morphine. He isn't eating much at all (two bites of watermelon and some juice yesterday - everything tastes yucky to him), he's sleeping all day, and his platelets won't stay steady - he's been needing transfusions at least every other day and now his urine is dipping for large amounts of blood. This is probably due to his low platelet levels but they are now sending samples out for testing for infections. The doctors now say that instead of letting his platelets drop to 15 before transfusion they are raising it to 30, which means he will probably need another transfusion today.

Which means we probably won't be going home for quite awhile.

I won't lie, it's tough. Extremely tough. To be away from home so long, to be separated from two of my children, to see my husband for about two hours in the past 25 days, to watch Jacob get bored out of his mind and hear him ask every day when we get to go home and have no answer. It's tough.

Yet it is what it is. It is just another ordeal in this journey called cancer and we hope, pray, and beg that this is the last of the journey. That we can depart from this crazy cancer train after this hospital stay once and for all. A mother will do anything for her child and will do it willingly, no matter how hard it is. Because it is what it is. It's a battle that needs to be fought.

Looking Up

Jacob's white counts rose from 2.4 yesterday to 7.6 today! He is engraphting! He did need platelets again for the second day in a row but that is not completely unexpected. They are dropping his morphine even lower today. He is feeling good - eating better, awake more, playing with toys, and actually did an activity for the first time in days. Child Life came in and made brownies with him and then played a couple games of Uno with him. This is the first time in two weeks that he has sat up at a table and felt good enough to do something fun. Things are looking up.

Update day 18

I thought that I would be updating more, considering all this "free time" that I have. It's difficult to feel the urge to write when every day is much of the same.

Today is day +9 (nine days after the stem cell transplant) and day 18 of being in the hospital. Jacob has continued to sleep away the days, though Friday was a good day where he was awake and even watched television with me. He is now on complete isolation (can't even leave his room) due to testing positive for C-Diff, which is an intestinal infection. The antibiotics seem to be settling the bathroom problems and the tummy aches from that but it will be about 10 days before they take him off isolation.

His rash is still covering his body but the pain from it is gone, the itching is much less today, and even though it looks terrible yet it seems to be getting better little by little. He had hives on his arm today after his shower but they quickly went away with a dose of Benedryl.

He is still getting all of his nutrition from an IV. He did drink some apple juice today and attempted two bites of Frosted Flakes. His appetite seems to be slowly returning as he is starting to show an interest in food, even if he doesn't partake.

He received platelets again this morning. His white count rose from 0.2 to 0.4. That is still non-existent but it is showing an improvement. Any day now the stem cells should engraph! Once they do he should start to feel better and better each day.

Rash Decisions

It's been a rough few days for Jacob. His mouth pain has increased along with the morphine dosage. He sleeps most of the time, only getting up to go potty or take a shower or force down some medicine. He's had a fever of around 101-102 the past several days. His white count has stayed at 0.1 for the past two days and he received both a blood and platelet transfusion yesterday.

He has also had a painful purple/reddish rash for a few days and it continues to spread all over his body. It is painful and the worst area is on the back of his legs behind his knees, which makes walking very painful. Dermatologists and the doctors have been trying to figure out if this is a chemotherapy/drug induced rash or fluid build up in the tissues. We have a cream to put on the rash and the doctors will now begin steroids hoping to flush out any fluids that may be collecting. It's highly disturbing to see your child in such a condition and I just want this to be over with! I pray that the stem cells begin to engraph soon and heal our little boy. Please pray for the doctors to figure out what is causing this rash and fix it shortly. Thank you!

Happiness in a Box

Jacob has been sleeping the past few days because of the morphine. His mouth is hurting pretty bad and he's stopped eating, which means that he will go on IV nutrition this evening. His white count is now at 0.0 and he had a platelet transfusion this morning as it had dropped to 6.

One thing he did wake up for was mail call. He's been receiving fun cards and little packages from family, friends, and some of you! One fun surprise was a box from a friend with 30 wrapped gifts. Each day he gets to open one gift. What a neat idea! He was so excited to open the first one, which was an adorable teddy bear.

Judging from the picture you can't tell how happy he was, but he was! The morphine and mouth sores just make him feel icky! Jacob loves mail call!

Updates

I had 48 hours at home with Becca and Joe while hubby took my place in the hospital with Jacob. I'm back in the saddle again this morning.

Jacob started having mouth pain on Thursday evening and was put on morphine for the pain. Today he seems fairly comfortable, just tired and grumpy. He received his stem cell transplant yesterday and smells strongly of creamed corn today (a side effect of the preservative that was used with the stem cells). It should take 10-14 days for the stem cells to engraph so the next week and a half will be fairly rough. His white count is down to 0.5 today and will continue to drop. He seems to be hungry but won't eat when food is placed in front of him, though I hope that he may eat the mashed potatoes that he wanted me to order him from the kitchen.

That's it in a nut shell! I'll update more later if anything changes. Thanks for all the prayers and fun cards that have been arriving at mail call!

-5

Today marks day -5 on the schedule. Which actually means day 3 of the chemotherapy. They mark it as day -8 to day 0. -8 was admission day, -7 to -2 are all chemotherapy days, -1 is a day of rest, 0 is stem cell transplant day and every day after that will be +1, +2, and so on. It's somewhat confusing, but they have charts up in the room for us to follow along, as well as a chart marking his counts daily.

So far so good. Jacob is almost finished with day 3 of chemo, with just 4 left to go. Aside from moments of "feeling dizzy" (nauseous, I presume) he has been doing well. Being in isolation is hard. It means that he can not leave the bone marrow unit, which is very small. There is a small play room across the hall and he can walk the small hallway if he so chooses, two things that he has yet to do. He enjoys the shower here and chooses to take them twice daily...sitting in there until I force him out! We are trying to keep busy with television (boy, with all these channels there really is nothing on!), books from the library, writing letters to his brother and sister, playing his Nintendo DS, and eating. How the boy can eat! I don't know if it is nerves or boredom but he is constantly hungry while here.

Long ago he tired of the room service food here. He hates the cafeteria food here (as do I). On weekdays we can frequent the Rooftop Cafe, which gets it's food and bakery items from local restaurants and serves delicious soups and Jacob's favorite treat, Scotcharoos. He has me pick him up a couple Wendy's Jr. cheeseburger deluxes when I am out. Otherwise, I try to stock the fridge here with healthy choices from the local Hy-Vee and the nearby food co-op. I love that place! While the prices are high, their sale items are priced great. I was able to get Jacob organic strawberries, organic raspberries, and organic milk for a nice price. While we don't often eat that way, I feel it is important as Jacob is being bombarded with "poison" right now, he doesn't need any more pesticides in his body. I stocked up on some good eats for this week for a much cheaper price then hospital food. They also have a deli there so I am able to pick up some side dishes for meals - I had to try the Spinach-feta orzo salad and found it to be a delicious and nutritious lunch! I'm happy to see Jacob eat so much, as I know there may be a week or two when he isn't able to eat much (or anything at all) due to the sores that will be in his mouth and throat. It's just a side effect of this treatment that we won't be able to avoid.

I forgot my camera so will grab that when I go home on leave sometime this week and hubby takes over. Thank you all for the continued prayers! If you would like to partake in a card shower to give Jacob something to look forward to each day, feel free to e-mail me for the hospital address. babys_mama1 "at" yahoo.com

Starting Point

Jacob was admitted a few hours ago to begin his stem cell transplant. This is the starting point of a stay that will last a month, if not more. Tonight he begins the hydration process and is receiving a blood transfusion as well since his Hemoglobin was down to 7.2 and they want to top him up. Tomorrow his chemotherapy will begin.

This is high dosage chemotherapy. He will be receiving Carboplatin and VP 16 (Etoposide) for 5 days. On day 6 he will receive Melphalan. One day of rest and the next day the stem cells will be introduced back into him. Those stem cells take around 14 days to engraph, which means when Jacob hits rock bottom within those 14 days his body will have no protection and things will be rough. I'm dreading it.

Today I'm counting my blessings. In between clinic visits and admission Jacob and I were able to go on a little date. It was nice to have a fun time eating out and shopping before this extended hospital stay. Also, right before leaving home our neighbor brought over a beautiful flower from his garden for me. Little did he know that we were about to embark on this journey right then. His timing was impeccable. As I drove away I set this flower on the dash board and tears sprang to me eyes. It was just what I needed..a beautiful send off on this journey we are about to embark.