For Today, I'm Okay

Yesterday was a bad day. I felt hopeless and adrift and alone.

Today is better. I've felt at peace. We haven't made any final decisions about the treatment plans and have actually avoided it today (deciding to get standard treatment or try a few clinical trials). We were going in circles before and just need a break. After two weeks of hell, we needed some normalcy. So today we celebrated our Christmas (which we missed out on with Jacob being in the hospital). We had our Christmas Eve last night and enjoyed watching "Christmas Vacation", eating cookies, and just being together. This morning the kids awoke to presents under the tree and we have spent the day together; watching movies and playing with toys. It felt...well...normal. I have my moments, of course, but overall it has been a wonderful day.

Jacob is thriving being at home. He's had a blast playing with his new toys and being back among his brother and sister. You could hardly tell that this boy had a very intensive surgery not even two weeks ago. He is in his element.

As we ring in a new year tonight I can only breathe a sigh of relief. 2010 was a HARD year. I am glad to be entering a new one. I know that this year will be one of trial and struggles, but I pray that we end 2011 with much better news than 2010 brought. I'm ready for a new year!

Turned Upside Down

Just as we were about to leave the hospital today the doctor came back in to tell us the second tests results were in and it is NOT the favorable type of Wilm's. This type of cancer is much harder to treat and Jacob will be needing more aggressive treatment.

We are home now. We will be home until Monday when he starts chemo (probably in-patient). He needs even more prayers now, as do we. Please add him to all your prayer circles.

All Eyes On Us

Today we had to go down to radiation to meet with the radiologist. When I wheeled Jacob into the waiting room all eyes turned to us. Every single person that was waiting was 50 years or older...and then came Jacob. Jacob upset the balance in the room. Some people averted their eyes, others came over to tell Jacob how beautiful his eyes were or ask him if he was up to a wheelchair race. Most of all, everyone had pity in their eyes.

It isn't right that a 5 year old boy has to go through this journey.

Tonight I have had to dwell on some tough decisions. Get the flu vaccination so close to him starting chemo and needing another dose in a month when his body has such a low immunity? Enroll him in a clinical study of Wilm's Tumor that may help, or hinder, his battle? There are no easy answers...and I don't have a clue tonight. I'm exhausted and overwhelmed and don't want to have to make decisions right now.

We are still in the hospital. This is day 9. Luckily, they did take the chest tube out today and we *may* get to go home tomorrow. The best news? The pathology reports show it is Favorable History Wilm's Tumor, which is the "good" kind. Much better statistics with this...70-80% at stage 4.

The overwhelming news? It looks as though he may be starting radiation (and possibly chemo) this Thursday...just two days away. We may be going home tomorrow but we will be back on Thursday. And Friday. And Monday...and so on. He will be having six days of radiation. The chemo will start for six weeks (once a week on an out-patient basis) and then they will check and see how it is progressing. Then maybe another 6-8 months of it. So once we get home we will still need to drive back and forth (we are 2 hours from the hospital) for the next week, and then weekly after that.

I ask for prayers this evening for me to have some answers and peace about the two topics above that I still am not decided on. I plan to sleep on it and hope to wake up with an answer. Tomorrow morning will also mean more scans with the radiologists to pinpoint the treatment, another meeting with the oncologist, and hopefully some discharge papers.

A Quickie

Just wanted to send a quick update. I'm not in the mood for writing. I wish I could crawl into bed (or in this case, the uncomfortable sofa) and sleep until this is over.

Since I can't (I can sit in this room for hours but the minute I attempt to lie down someone comes in!) I will write out the latest.

The chest tube is still not out. There is still some air in the abdomen so another day of that. Which means more x-rays. More days in the hospital. More chances of going insane.

We did hear that is for sure a Wilm's Tumor. We won't know which type until tomorrow (favorable or not). I pray, pray, pray that it is the favorable type, as that responds very well to the treatment. The other one...well, the statistics are scary on that one. Please don't let it be that type, God. The oncologist did say that from the way it has acted so far he thinks it seems like the favorable type but he can't say which it is. I'm clinging to hope right now, clinging to his words and hoping he is right.

With that said, Jacob will be starting chemo on Monday...yes, one week from today we will be back here getting his first treatments. The oncologist didn't go into much detail because we won't have any specifics until the whole pathology report is in but his chemo treatments can take several days at a time...which means more hospital stays for us. I'm not sure how we will be working this as Ben doesn't have a whole lot of paid time off but I'm sure that we will juggle childcare with the other two somehow - we have to one way or another.

It's all happening so fast, and yet so slowly at the same time. It's been a real wait to get this chest tube out and to hear the pathology reports; and yet the actions of the team are quick. He was diagnosed quickly, was able to be operated on quickly, and will be starting his treatments quickly. It's hard to process so much at once but also means that we are getting the ball rolling too.

It is odd how quickly life changes. Just 12 days ago everything was normal. Now we've spent 8 days in the hospital and will be starting chemo in a week. It makes me wish with every part of my being that I had fully appreciated my normal everyday life. Because that is no more.

Jacob's Progress

My mom stayed overnight at the Ronald McDonald House (which is just a few blocks from the hospital) so was able to visit with me last night and much of today. She just left, along with my dad and sister who came to pick her up, and Jacob is now asleep for a nap. After he wakes up he can eat supper (he has a good appetite!) and go to the playroom.

He is off all IV medicine and is doing great with just Motrin. They just took him off suction, will take another x-ray tonight to make sure he is doing good off suction (boy, I hate all these x-rays) and then maybe be able to pull the chest tube tomorrow. At the very earliest maybe we can go home tomorrow evening but I'm guessing the discharge date will probably be Tuesday.

Once again, I forgot another important occasion. I called my husband this morning to talk and only realized after I talked to him that I forgot to say "Happy Birthday". My husband turned 33 today. I didn't even get to give him a birthday hug. So sweetie, if you are reading this...Happy Birthday and I Love You!

I'm trying to continue taking this one day at a time. I've been in here so long that it feels like a prison. I hope that we are paroled soon. Thank you all again for all your prayers and well wishes...at times you are my only connection to the outside world!

I Forgot Christmas

In the back of my mind I knew that Christmas was this week. I knew that Jacob would be spending Christmas in the hospital.

Then the days started to blend into one another. I feel a bit like a caged animal spending my days in this hospital room. I haven't been outside or breathed in fresh air since Monday morning. I feel like I am in another world. I see parents walking the halls with tears in their eyes. I see little children with bald heads and IV lines trailing behind them and I smile a comforting smile to their parents, while trying to hold back tears because this is my child's future. I wheel my little boy to x-ray in a wheelchair with tubes sticking out of him and I see other people smiling that smile to me. I am that parent that others pity.

When we first arrived here I was looking at the dry erase board in our room and thought it was funny that the nurses had to write down the day and the date. Who forgets what day it is?! Then on Wednesday I couldn't remember if it was Tuesday or Friday (turns out it was neither). I couldn't remember how many days I had been here at the hospital. It all turned into a blur.

And I forgot Christmas. Yesterday someone wished me a good Christmas Eve eve and it was only then that I realized Christmas was just two days away. This morning I had forgotten again, until my husband called me to see if he should still attempt to come to the hospital with the kids for Christmas Eve. Oh, yeah, Christmas is tomorrow. There is no magical feeling in the air. No excitement or wonderment. Right now my life is basic survival, somewhat physically (trying to get sleep in the hospital or finding nourishing food in the cafeteria that doesn't cost an arm and a leg is almost impossible) but more mentally. I await the pathology reports (which probably will not come in until next week) and try not to take it personally when my son gets mad with me because of everything he has been through this week. I try not to let my mind wander to the dark side of things, because I just can't handle that.

And yet, while I am not in the Christmas spirit I have things to be thankful for. I'm thankful that Jacob got through surgery okay. I'm thankful that he is recovering well and isn't in a whole lot of pain. I'm thankful that my husband is taking good care of the other kids and that they are getting along well without me. I'm thankful for my mom who was able to spend a few nights in the hospital with Jacob and I and for my dad who is watching my younger siblings so that my mom can be at the hospital and also helping my younger sister care for our animals. I am thankful for all our friends, family, and neighbors that have stepped in and helped out so much. I'm thankful for the strangers that have poured their love and prayers upon us. I'm thankful for the doctors and nurses that care for my child and can still make him laugh when he is in pain. I'm thankful to see how good people really are, when before I had lost a lot of faith in humanity.

Today was a better day. Jacob is eating more. He walked to the playroom and sat down and played with me for awhile and only had to push his medicine button once. His x-ray showed that the air bubbles in his chest are decreasing so he will probably not need another chest tube, though the one he has in will stay in for a few more days on suction, hopefully getting rid of the bubbles completely. We will be in the hospital for several more days, I think.

So while I remember that today is Friday, December 24th (okay, I actually had to look at the board to remind myself it is a Friday) I want to wish you all a Merry Christmas. You have all been a huge support for me and I thank you all for your prayers for Jacob.

Day 3

Today we had hoped to get the chest tube taken out but the x-ray showed some three different air bubbles around the lungs. They hooked the chest tube up to a suction for most of the day and retook the x-rays again this evening. It looks like one air bubble is gone, but the one that they are the most worried about is still there. It sounds like we will keep him hooked up to suction all night and take another x-ray tomorrow to see if it is gone (or at least not bigger). So please keep that in your prayers, as they may need to put a chest tube in the right side if this does not improve...and Jacob really could do without any more procedures.

I haven't asked about a date to go home as I think it is touch and go - just depends on what these air bubbles do. Otherwise, Jacob is doing well. He is eating more and had almost a whole hamburger for lunch and ordered another one for supper, which he is working on as we speak, along with his chocolate milk. The pain is controlled most of the time, though he has pain when he coughs (the deep intake of breathe causes pain in the incisions) and some gas pains.

I'm missing the other kids but in a vague sort of way. I know where I am needed and I am here, beside him, at all times. We are hoping that the kids can come for a visit tomorrow night so we can have a little Christmas Eve celebration in the room and then Ben and the kids can go to the Ronald McDonald House to spend the night and stop here again on Christmas. Our real Christmas celebration will happen once we all go home...after all, Santa is really good about delaying Christmas when needed.

No pathology report yet. I'm still dreading it while also hoping for some good results. Maybe tomorrow?

Keep praying, please. I've been warmed by all your thoughts, prayers, and well wishes. Keep them coming as we will need them for awhile.