Saturday, January 31, 2009

Relay for Life in Lethbridge Alberta

This is a portion of an e-mail that my dad sent me earlier today. I am posting it here for any that may be reading in the Lethbridge, Alberta Canada area and would be interested in supporting Relay for Life there. I hope you will all have a great time there and be able to raise lots of money to fight cancer.

We are looking for all who would like to spend a night together honouring Gracie in her fight against Cancer along with all the others who have to face this disease.  The Relay for Life event in Lethbridge, Alberta is June 12 & 13, 2009.  There is a $15 registration fee and you are encouraged to obtain pledges of at least $100.  Grace's' Grandparents would be happy to organize the team.  you may respond to smitrs@canada.com

Gracie pics and a big thank you to all!







The first picture is one her mom took yesterday. The next three pictures are of Gracie today. She had a wonderful time playing outside in her swimming suit (Gotta love Texas winter). (The fourth one shows how much her hair is thinning out. Maybe next time you see a picture she will not have any hair left to see.) Then the final picture is from a few days ago. This is Gracie on my bed. That is her favorite place to go at night. She usually falls asleep there and then I take her up to her room.

Gracie is doing really well. In the week before round six things have gone quite well. She had her blood tested yesterday but we did not hear back on the results so they must have been fine. Gracie keeps talking about her friends at the blood clinic and says that she would like to go back there soon. I just want to tell her that it will be soon enough.
Thank you for all your support and love. I was reminded today of how much people cared as I went grocery shopping and used a gift card we had been given. It has been amazing to see how many people try to reach out in so many ways. We are grateful beyond measure for the anonymous "gas money" that found its way to our door before the first round, for the gift cards for Molly Maids, groceries, gas, etc, for the people that played secret Santa leading up to Christmas, for the "Santa" that dropped a bag of wrapped gifts for each member of the family a couple of weeks prior to Christmas, for the family members that have come each month and the family that have financially contributed to Gracie's care and our visits to Houston, for the cute hats that Gracie has received, the many gifts that Gracie and her siblings have received, the messages on the phone, e-mail and by mail, the kind neighbor just willing to talk and listen, the thoughtful books and quotes that have been shared, helping get my sister to Florida in March for Gracie's wish trip and the list could go on and on. It is amazing the way that people reach out to help others and I only hope that I can be as kind in return.
Thank you all.

Thursday, January 29, 2009

Monday MRI

Gracie went for a followup MRI on Monday morning. We haven't talked to a doctor since, but we have no worries about the results. They didn't do the MRI because they were worried about anything, more just because it's protocol and they want to make sure she's okay as she completes chemotherapy. She'll go for many more "routine" MRI's throughout her life. She did well at the MRI, they didn't use general anesthetic, but rather gave her a hefty dose of chloral hydrate to make her sleep (91.8 mg/kg). Boy did it work. She slept for a long time and then was grumpy for a few hours. She perked up right around bed time. Wouldn't ya know it. Actually she wasn't up too late, so we were really grateful.

We've noticed since the last chemo that Gracie's pupils have been unequal. They're reactive to light but the right eye is sluggish.  Last week I called Gracie's ophthalmologist Dr. O. to ask her about this. I don't think she got the message until Tuesday morning when we got a phone call asking us to come in that day. (Yes, people like us are the reason why she has such long wait times some days) After she got done the examination she said she wasn't sure why the pupils are unequal, maybe it's the chemo? But she wanted to see us right away to make sure the cancer hadn't spread into the anterior chamber of the eye, which is one of the two ways that this cancer can exit the eye. She ruled that out, but boy are we glad she didn't tell us that she was concerned about that in the morning. It would have made for an extremely stressful day. As it was we were able to go blissfully (relatively) about our daily routines. I'm sure she had more angst about it than we did. Sometimes I really enjoy ignorance. 

Gracie also had blood work done on Tuesday morning. The results were:

HgB - 8.5
Platelets - 92 (good thing because she bonked her head REALLY hard Monday night)
TWC - 3.7
ANC - 550

We're scheduled for her sixth and FINAL round of chemo next Thursday!!! We're pretty excited about that, but we don't know what to expect after that either. The cancer was supposed to be gone after 6 rounds and it's not. So where do we go from here? We've discussed several options including proton beam radiation, radiation plaques, enucleation and even just observing for a little while. Hopefully we'll know more by next weekend. 

Thank you to those of you who have expressed interest in doing the Relay for Life with us. I'll try to remember who all said they wanted to join our team and send you invitations online. If I forget you don't take it personally it was a complete mistake. We still want you on our team! I believe you can sign up directly through our Relay web site (there is a link on the right side of the blog page), if not let me know and I'll send you an invitation. This year the Relay is having an 80's theme and so let me know if you have any good ideas of how to decorate our campsite or a team subtheme. Feel free to post any ideas you have. I've considered getting Atari's for entertainment, but I'm not sure if we'll have access to electricity. It'll be so much fun! 

Sunday, January 25, 2009

Gracie's home!

Gracie arrived home at about 2PM from the hospital. It was much better than anticipated. She is happy and noisy. Her mom is tired and now trying to sleep. Her platelets were at 10 so she was given platelets but her other levels were high enough that whole blood was not given this time. Thanks for all of your care and concern!

A few pictures

I realized that we have been kind of negligent with showing pictures lately so I figured I would give you a few here today. Gracie has gone with her mom up to the hospital today to see if she needs a transfusion. Hopefully they will make it home in good time. Anyway, enjoy!
This was taken this morning at 8AM as Gracie was heading out to the hospital with her mom. She told me that she was "going to see her friends and that her friends were going to do something funny for her." She clarified saying that they were going to make faces and have fun! I am sure that with Gracie they will have fun.


This was taken in Houston waiting for her EUA (January 8, 2009). This is in the afternoon and Gracie has not eaten since the day before. She is having a lot of fun playing trucks with me as we are the only ones left in the waiting room.

This is also from our last trip to Houston (January 8, 2009). Gracie found a rocking horse in the cancer clinic and thought it was pretty fun!


5 month anniversary

Well, five months ago, Gracie was officially diagnosed with retinoblastoma. It was a week after we had visited with our friend and ophthalmologist, who had been the first to ever tell me about the disease. The time has gone by so fast in some ways and so slow in others. I have learned a lot about cancer, blood counts, insurance company practices, hospitals, medications, myself, the resilience of young children, etc. The list could go on forever. We have tried to be true to the purposes of our blog and share our experiences honestly and somewhat openly. We have heard from many who have found the blog and it has helped them, even in some small way. We are grateful for that, relatively early, feedback from some. It helps me to keep going. I have not been the best blogger of recent, but Stephanie has really helped to pick up the slack.

So as I look back over the past five months, I think that it has been a whole lot easier than I ever imagined. I thought that Gracie would hurt more. I thought there would be more vomiting, less sleep and more crying from and because of Gracie. I even thought there would be more time thinking constantly about Gracie then there has been. I told a friend once that having a child fighting cancer is kind of like putting a child in ballet. You have lots of practices you have to attend, money you have to spend and time you need to make to get the right equipment (or medicine, blood products, etc.). Then you hope that everything turns out beautifully at the end.
On the other hand, the past five months have been a lot harder than I could have ever imagined. Preparing to give Gracie to a doctor, where you know that she will come back in considerable pain is hard. Waiting in small rooms near a surgical unit for word from your doctor about whether cancer is spreading or shrinking is hard. Getting bad news in those rooms is hard. Speaking and thinking about the possible procedures and surgeries that your child may or may not need is hard. Five months ago, I remember thinking to myself that there were lots of things that I would need to do in order to help Gracie and my family but that there were also lots of things that I needed to do in order to keep up at school and work. I thought about how I could just make sure to focus on one thing at a time so that everything could get accomplished. I was sure that it would not be that hard. I reasoned that there had been many times in the past where I had various obligations and I had made it through most of that alright, so why not now. Well, it was a lot harder than I ever thought. I grossly underestimated how difficult it would be to concentrate the couple days prior to or the few days following chemo. It was not hard to mow the lawn or do some school assignment but I found myself unable to focus when I needed to concentrate on studies or to integrate ideas and concepts that were new to me. In many ways it was frustrating for me and much harder than I had thought. I am not sure that I have gotten any better but I am trying. 
I guess, looking back, I really did not know what to expect five months ago. Very few things that I expected happened. However, I have been so blessed to see how much people care for one another. I have been able to observe how much people love and care for my little Gracie. I have found peace and comfort in knowing that thought and prayers were constantly on Gracie and our family. I have seen miracles, big and small. I have had my faith and friendships strengthened. I have learned from Gracie how be happy even when life is not perfect. 

I thought I should share one story of Gracie while I was thinking about it. As you know she went to have her blood counts checked twice this week. Well, she really does not like getting poked and tells the blood techs as much each time. However, she is always excited to go talk to her friends there. She knows their names and they know hers. Apparently there are not a lot of children getting their blood checked on a regular basis at this location and we go early each time so have the same people. I know Stephanie had a bad experience the first couple of times getting blood but since then Gracie and I have not had any problems. The staff is wonderful and friendly and they are quick and efficient with getting the needed blood. I could not ask for any better people to help her. Gracie is a big hit it seems when she bounces into the office. She marches right up to the desk and "signs" in. Really she just scribbles on the next available line on the sign up sheet but they know who it is. Then she talks to the staff about their fish, or Christmas, or DisneyWorld or whatever she or they want to talk about.
So on Wednesday, Gracie made sure to bring her money (she keeps 50 cents in a little plastic bucket). She was so excited to show her friends her money and even to give some to them. It is pretty cute to see her run up and show it off to everyone. Of course, the money rattles in the container and she regularly spilled the money on the floor and worried that she would never find it all.
Anyway, she was about to get her blood drawn and had two techs in the room with her and told them, "I brought some money for my friends!" They seemed pleased but refused the money. One of her friends dropped another coin into her collection and Gracie was pretty impressed by that! Anyway, they got some blood without much protest and made sure she got a pink bandage and three pooh stickers (after some not so subtle reminders). She said thanks to all her friends and bounced back out to the car.
To me our little trip just personified Gracie's attitude amidst everything she has been through over the past five months. She usually knows that there will be some pain but always bounces in with a smile, leaves with a smile and wants to make her friends (aka everyone) happy along the way. I think the world would be a whole lot better if there were more people going around trying to do that. She sure makes my world a whole lot better having her here!

As always, thank you for your love and concern. We continue to pray for Gracie to keep both her eyes and that the tumors will not grow or spread! Go Gracie go!

Saturday, January 24, 2009

Yesterday's counts

Okay, I really did get these results yesterday but I've been busy and am just now getting around to reporting them.

HgB - 8.6
Platelets - 33
ANC - 690

So it's good news that the ANC is already going up, and it didn't drop as low as I was afraid it would. Her platelets were low but not low enough to need a transfusion at that point. However by tonight her legs were covered in bruises and she had petechia on the back of her neck and in her mouth. I called the on call oncologist and asked what she wanted to do with her. We're going to the hospital at 8 am to check her blood and given that she's already got symptoms she'll probably be getting platelets tomorrow.  So James gets to take the other three kids to church and I'll spend the day at the hospital with Gracie. Hopefully it won't be too long, but I'm not holding my breath that I'll beat them home (church is from 11-2). 

Stephanie

Wednesday, January 21, 2009

Today's Counts

HbG 9.4
Platelets - 93 
ANC - 527 

Her platelets are looking really good still. We'll check again on Friday just so that we don't run into problems over the weekend.

Monday, January 19, 2009

Relay for Life

In case it has escaped any of your notice in the right side bar there is a link that says Relay for Life. Relay for life is an all night relay ran by the American Cancer Society (starts at 7 pm ends at 7am). Teams of 10-15 people are entered and one member from your team is expected to be part of the relay at all times during the 12 hour event. All they really need to do is walk around the track. No running, no jogging, just walking (although I'm sure running is allowed). Each team, and each member on the team is expected to raise money on behalf of the American Cancer Society. James and I have entered a team in honour of Gracie, called none other than "We Love Gracie". We got this idea from a fellow mother of a child with retinoblastoma. This little girl has lost both of her eyes to this disease and in order to fight back against cancer their family and friends enter a team in a Houston Relay for Life every year. They raise a tonne of money and they have an all night party each year in support of their little girl. At the beginning of each Relay (several are held all over the world) they have a ceremony to honour cancer survivors. The cancer survivor's get to do a survivors lap around the track and during the night they light luminarias to honour survivors, or those who lost their battle with cancer.

 We want to start this tradition for Gracie where we also celebrate Gracie kickin' cancer's butt every year (cause we all know it's going to happen). My mother, my sister and possibly my brother are going to be on our team. Including James and I this brings our team total to 4 possibly 5 people. So this is where we really could use your help. We'd really like to have 5 or more of you be on our team. If you don't want to be on our team, you can start your own team. If we have more than 15 people wanting to join we'll register 2 or more teams in honour of Gracie. If you don't want to join a team period then you can donate to someone (preferrably on our team:) If you don't want to be on our team, or another team and if you don't have any money to donate PLEASE mark May 1st on your calendar so that you can show up and cheer Gracie on as she participates in her survivor celebrations. This family in Houston has a huge group there to cheer on their daughter, and I'm not trying to compete with them but they are turning out to be a huge inspiration and support for me. I want Gracie to know how many people there are in this world who are there to support her in this. As James clarified, this is more of a support for us right now, Gracie is still just a regular 3 year old who doesn't understand how her entire life will never be the same again. But she will be able to look back on the pictures of these days and see how big her support network really was, how big our whole families support system really is. It brings tears to my eyes even thinking about actually seeing so many of you who remember Gracie in your thoughts and prayers being there to cheer her and us along on this night of celebration. 

So we still have several months left until this event (May 1) but I'd like to have people committed to joining our team before too long. I've set a really low fundraising goal for now because I didn't want to overwhelm people, but I hope that we far exceed our team goal. (I'm new to fundraising perhaps a better strategy would have been to aim high and then risk falling short of the goal). If you'd like to join our team PLEASE email James or I (I believe our address is in our profile if you don't already have it). We'd really really love to have you on our team. Like I said, the more teams, the better. 

If you'd like to donate to our team so that we can find a cure for cancer so that we don't have to continually live in fear of Gracie developing further cancers (which she has a strong genetic predisposition for) you can click on my link to our team in the right side bar. 

If you'd like to know more about Relay for Life, you also can feel free to click on our link in the right side bar. 

If you'd like to show up to support Gracie in her survivor lap (which I hope all of you do, consider this a personal invitation) please stay tuned for further information. I'll provide it as I get it. And I'll keep inviting you until the time comes. 

There has been talk of entering a team in Canada  (specifically Lethbridge) for all of our family to participate in. Perhaps if this applies to you you can harass my father in law or one of my sister's in law. They'd most likely be the ones organizing such an event and I'm sure you'd be welcome to join their team. The Lethbridge Relay for Life is scheduled for June I believe. PLENTY of time to raise lots of money to finding a cure for cancer. 

Another Transfusion

As our friend gave us a heads up that the clinic may be closed today due to MLK day I called Thursday and to my relief found out that the clinic was indeed open today. Our appointment was at 10am. It wasn't until this morning that I noticed unusual bruising on Gracie's legs and arms and petechia (little red spots) on her face and in her mouth. These are tell tale signs of low platelets. They have again changed clinic policy making it easier to get Gracie's blood tests done again. Hallelujah.  Her counts were:

TWC -  4.25
HgB - 9.3
ANC - 560
Platelets - 18

So she did get her platelets today. We'll be back again in a couple days for more platelets I'm sure, perhaps for some blood too but her HgB looks pretty good right now. Of course she isn't going to nadir (reach her lowest point) until Friday or Saturday or Sunday so who knows what else is coming. With that in consideration it's a little worrisome that her ANC is so low already.Last month her ANC stayed in the 800's until Friday when it dropped to 320 (a drop of over 500) in less than 24 hours. It makes me want to check counts on a daily basis! And of course I just had to start getting a sore throat last night.  Her sister asked if she could have a friend over tomorrow. That was an emphatic NO. This week no friends are allowed until Gracie's counts start going up again. It must be hard having a sibling with cancer. It has such an impact on everyone in the family. Grace's transfusion ran well without complications, but this is the second time we've been there when someone else has had a reaction. We hope to keep avoiding that little treat, although it's always a risk you take when you're infusing blood products (or chemo for that matter).  It's a good thing the nurses are so good as they are right on top of things if someone even hints at having a reaction to what is being infused. 

Today as it was a day off school we took all 4 of our children with us to the clinic. Our oldest had wanted to go to the clinic for quite some time as she keeps hearing reports of how fun it is but she's never got to go before. Thank heaven's things ran fairly smoothly. The girls played in the craft room for a good portion of time where they got to help one of the volunteers make patches to go on a patchwork quilt that the cancer kids are assembling. It looks like it will be a really neat quilt. They had the world's best mac and cheese in stock (courtesy of A Trip to Bountiful Bakery) and they also were able to have some Amy's ice cream (good stuff, my favourite is Mexican Vanilla). Our day at the clinic lasted 4 hours which is really good considering how long we've had to stay there in the past. Waiting always takes the most time. I'm glad the girls had so much fun. Considering it was a cancer clinic it was a relatively "fun" way to spend the day. Although next MLK day we hope to be on a hike instead with a totally cancer free family.

Stephanie

Thursday, January 15, 2009

Today's counts

TWC - 4.4
HgB -  10.5
Platelets - 65
ANC - 1800


This is the lowest the platelets have been at 1 week post chemo. I'm calling to day to see about scheduling a transfusion for Monday. With platelets this low I'm wondering if she'll need 3 platelets transfusions this month. Last month at this point her ANC was 2700 and one week later it was down to 320 (could be an interesting month regarding immunity). The only reason her ANC is as high as it is right now is because of the Neulasta injection I gave her 36 hours post chemo. Remember it was low going into chemo this time. Her HgB is better than last month and her total white count is about the same. 

Friday, January 9, 2009

Day 2 Round 5

I'm happy to report that today has been completely uneventful. Gracie has been doing wonderfully well. She spent a little time in the play room. She watched LOTS of Little Einsteins (her absolute favourite). She did crafts when the activity lady came to the room. Basically she's been a good girl passing the time as best as she can. The chemo must be making her tired though as she fell asleep around 6pm and she still shows no signs of waking. We were pretty sure after falling asleep so early she'd wake up late and then be up much of the night. So far, so good though. Gracie's just started to get her chemo for tonight. I'll try to stay up with her while the infusion is running which will make it a very late night tonight. James stayed up with her last night so it's only fair that I take my turn tonight. Thank heavens James was able to fall asleep early tonight. We've already got things arranged for discharge tomorrow so hopefully by the time we're ready to leave, they'll be ready to let us go. James took advantage of everything going so well today and went to the Houston temple. Usually we attend in San Antonio, but being that we're already in Houston things worked out well for him to go today. As always it was a good experience for him. Next month I'll go while James stays with Grace. It's nice to give a short and boring post while Gracie is doing chemo. It reminds me of how truly blessed we are as we go through this experience.

Stephanie

Thursday, January 8, 2009

Day 1 Round 5

We arrived at the hospital today at 0830 so that Gracie could check into the cancer clinic and get seen by an oncologist before we had to go to preop. All looked well during Gracie's assessment. Her ANC is still only 960, which is the lowest it's ever been for chemo. But she's doing really well. Her blood for the genetic testing was drawn. Hopefully we'll get those results by mid February. We're really excited to be able to genetically clear all the rest of our kids and their cousins for risk of retinoblastoma. Here's hoping she has a mosaic mutation, which means that it won't be in every cell. After the blood draw and oncology assessment Gracie had to arrive at preop at 1130. We saw Dr. P and her residents really soon after our arrival and we figured we might be able to get her in a little early. Boy were we wrong. Gracie didn't get in for her EUA until 3:30. Keep in mind she'd been fasting since 9pm last night. James and I were hungry so I can't imagine how she was feeling. But she's such a trooper, she only said she was hungry once, maybe twice. And she didn't whine about it, she just made a statement that she was hungry. The EUA took about an hour.


Now I (James) am writing. The internet connection dropped and Stephanie lost most of her post so I get to summarize the second time. :)

After the exam Dr. P (our pediatric ophthalmologist) came in to talk to us. We got good news and bad. The tumors are not growing and no new tumors have been seen! However, the tumors are not really shrinking or calcifying either. The right eye (the one with the largest tumors and viteral seeds) has seen basically no change since the first time Dr. P looked at it. The three rounds of injections, which ended in Dec, were suppose to work at killing the viteral seeds and reducing the tumors in that eye. It appears that the tumors have been fairly resistant to the treatments thus far. It is really good news that the tumors have not grown though. Some of the viteral seeds have calcium around them. This is a good sign for those seeds as that means they are unlikely to grow further and can be left.

It was hoped that all of the viteral seeds would calcify. Dr. P explained that she feels that many of the viteral seeds remain active but the tumors on the retina (including the one right next to the optic nerve) are somewhat of a mystery. She has considered the possibility that they are retinocytomas (tumors that are not growing and will not grow further on the retina). However, they are larger then most retinocytomas and have other non-classic retinocytoma characteristics, so she feels that the tumors are likely not just retinocytomas and further growth is limited with the current chemotherapy treatments. Vision in the right eye remains good and Gracie is not experiencing pain in the eye. Dr. P says there is no urgent need to remove the eye at present because the tumors are regularily monitored and there has been no tumor growth to this point. Additionally, Dr. P does not want to ennucleate the eye or procede with other possible treatments without a second opinion. A Dr. G (another ophthamologist that deals with retinoblastoma) from a neighboring medical facility is going to be asked to look at Gracie's file and pictures to see if proton beam radiation or some other type of treatment would possibly help destroy the cancer in the right eye. I am not sure whether Dr. G will have a look at the information before or after our next appointment but certainly before we decide our next treatment alternative for the right eye. Stephanie say Dr. M (our oncologist) in the hallway this evening and he reiterated that we do not want to remove the right eye when the tumors are not advancing and the eye sight is still so good! We think that is excellent news and hope that the tumors never progress (regression would be nice though).

So now the left eye. The left eye has two tumors, a small one and a medium-sized one. Dr. P said that the small tumor is basically taken care of. It is still a little thicker than she would like but she thinks the tumor is dead and will not be too much of a concern from now on. The medium-sized tumor is not responding all that much, if at all. It is not growing at all either so that is really positive. Dr. P again lasered this tumor in hopes that some progress can be seen at our next appointment (in four weeks). She thinks that we should complete our current treatment schedule (one more chemotherapy session) and then decide how best to proceed. There is the possibility that this tumor is not growing so we could just leave it and monitor the situation closely or we could try a plaque. A plaque is a radioactive patch that would be placed on the outside of the eye, directly behind the tumor. This would release radiation onto the tumor for a few days and hopefully kill the rest of the tumor. Dr. P sends all of her patients that need this treatment to Dr. G in an adjacent facility. Dr. G deals with radition in retinoblastoma patients. So while we hope that the medium-sized tumor starts to shrink we are pleased to know that other treatments are readily available close by.

In many ways I was very pleased with the results of today. It is comforting to know that the tumors are not spreading and that there are many good options, not only for Gracie but also for saving her right eye. We continue to hope and pray that things will go well for her in preserving her vision in both eyes!

After our discussion with Dr. P, I went and picked up some food for us while Stephanie waited with Gracie in recovery. Gracie woke up quite groggy and her eyes were in some pain from being poked and prodded. She quickly drank 3 juice containers and a popcicle before her bed became available at 5:45PM. There was a bit of commotion in the recovery room as the nurses there thought we were being discharged and were not prepared to get us to a room. Eventually the correct paperwork was found and a room became available for which we are very grateful. By the time we were in our room Gracie was back to her normal self. She was happy to talk to all of the doctors and nurses and was eating and drinking lots. She loved playing games, coloring and making bead necklaces in the play room on our floor. Later she watched a movie and played games on our phone until chemotherapy started at about 10PM. She fell asleep about then and has slept through the bulk of the treatment. It is nice to see her so happy and well but will more work to entertain a lively little girl for the next 24 hours than it has been the previous three visits.

We are all extremely grateful for the many prayers and much concern for Gracie over the past little while, especially the past few days. It has been an anxious time for me. I have had a hard time thinking about much else over the past 48 hours. Despite having lots of other things that I should think about, I could not help but think about Gracie's future and some of the decisions that we may have to make. I am glad that the tumors have not grown at all and have given us a greater variety of treatment options. I know that Gracie has been blessed so much! I continue to hope and pray for Gracie and her eyes. I am grateful for the optimism and hope that Stephanie and Gracie's sisters radiate. I have surely been blessed and know that Gracie will have lots of love and happiness no matter what. I look back at all of the things that have happened over the past 5 months and all of the wonderful people that have helped us so much. I cannot say how thankful I am.

Lastly, as I think about all of the things that have happened (and have not happened) over the past 5 months, I cannot help to see the many miracles that we have seen. For Gracie to have gone through these many months and never really getting ill, despite everyone else in the family being ill various times have been such a blessing. For Gracie to have remained always cheerful and upbeat throughout this whole ordeal has been amazing. I am always so impressed when she happily comes to the hospital or to the blood clinic because she is excited to she her "friends" again. She is a real sweetheart. For Stephanie to have seen the tumor at the time she did and for all of our appointments to have worked out as they should, which demonstrate how much we are cared for even when we do not really know it at the time. And so I thank my Heavenly Father- for a great family and many great friends, for peace and hope in times of uncertainty and for the miracles in my life.

Wednesday, January 7, 2009

Gracie Battered and Bruised


Monday morning while James was busy doing school work and I was finishing getting ready for the day we heard two children erupt into screams and tears. Both of us quickly rushed to the scene to figure out what had happened. We found our 16 month old and Gracie laying underneath our computer. Both of them were screaming. James proceeded to move the computer screen so we could get to the kids while I went for the baby first. As I was soothing him I looked over my shoulder and realized that Gracie was bleeding from her head. James realized the same thing at about the same time. He picked her up and I got a cloth wet to stop the bleeding. The bleeding actually stopped really easy so we were extremely glad that her platelets are really good right now, otherwise it would have been a 911 call and an ambulance trip to the children's hospital. Once the bleeding stopped we were able to get a better view of the laceration. It was about 1 inch long, but fairly deep. We didn't see skull, but I think we were nigh unto it. But there isn't much fat on top of the head, so that's not extremely difficult. It would have been about 2 inches back in the hair line, but that particular spot on her head is bald now so it afforded a really good view. We were able to take her to the pediatrician's office for stitches. When we got there they were weighing stitches vs. dermabond. We decided to go for the glue. Yay, fewer pokes for Gracie.

So from our 5 year old we have now got a clear picture of what exactly happened to cause this chaos. We don't have a TV so our kids have to watch movies on our computer. At the time it was kept in in the living room on a consol instead of a desk because it takes up less room. As it's an imac it doesn't really have that much bulk to require a desk. Gracie was sitting on the floor watching the movie, our 5 year old was sitting on the couch. Our baby was just cruising around. Now he's shown interest in the keyboard and mouse before, but never the computer itself. Until then. He reached up and pulled the entire computer off the stand. Now if you aren't familiar with imacs I'll just clarify that the screen IS the computer, and it's reasonably flat but it's still a 24 in screen. And now that we've looked it over really well we realize that the edges could be very sharp if it happened to land on your head, which is what happened to poor Gracie. So yesterday James made an essential purchase of a new corner desk (thanks to Craigslist) and the computer will now be stored in our bedroom on a deep desk and I don't see our baby being able to reach it to flip it over any more. (We can even hide the keyboard and mouse easier!) This was completely edicted as a safety necessity.

When our 7 year old was walking home from school with James and he told her about the accident her first question was "Is the computer okay?!" So in case any of you are also worried about the computer. It can take a licking and keep on ticking. It kept playing the movie (Dumbo) throughout the whole ordeal.

Gracie also was playing in a laundry basket today and flipped it over. She cried and we knew she was hurt but it wasn't until a few minutes later when I saw blood on my mom's shoulder that my mother and I realized that she was bleeding. Thank heaven's it was only a small split lip. But we figure we're trying really hard to bring Gracie back to the clinic tomorrow just as pitiful looking as we can make her. She is doing just fine though and recovered from both of her accidents very quickly. Her head still has a black and blue goose egg, and of course the laceration is still highly visible, but it is well approximated so I guess the glue is holding strong. No signs of infection. She's happy that the doctor made her head "all better". We're happy that no matter comes her way she takes everything in stride.

Gracie will not be going for her EUA until tomorrow afternoon. It seems that there was a bit of a mix up. Katie our nurse practitioner who we always work with started maternity leave at the end of December (and we wish her well), but because she was gone no one remembered to make sure we were on the surgery schedule for tomorrow. This was compounded by the fact that the surgery scheduler who has always scheduled us no longer works at Texas Childrens. I usually get a phone call by noon the day before the EUA telling me when to have Grace at the hospital. When by 1:30 no one had called me I started making phone calls. That's when we realized that she had been completely left off of tomorrow's schedule. The new surgery scheduler felt horrible and repeatedly apologized to me. It's not a huge deal. I'm just glad that I thought about it at 1:30 instead of realizing at 5 when no one was in their offices any more and we couldn't solve the problem. Thankfully I remembered in good time, and a potentially very bad situation was remedied. If it wasn't then I'd really be expecting some apologies. As it is we can deal wlith it. They usually schedule the younger kids for earlier in the morning, but because the slots were all taken all ready they just had to tag Gracie onto the end of the day. It's unfortunate because Gracie will have to be fasting for a really long time, but I'm still just grateful that it's getting done tomorrow. I need to know how these eyes are doing!

We're actually sitting in the hotel room in Houston right now. James and Grace are both asleep, I'm still wide awake. There is always at least some degree of anxiety before checking in. Actually I was so nervous a few days ago that my stomach was continually in knots, but as of last night I started doing really well. All the worries were replaced with peace. It happened while I was saying my bedtime prayers. I wasn't even praying all that earnestly, it's just that I was praying. I still don't know how things will go tomorrow, but the constant anxiety I was feeling is now gone. It's such a blessing from God. No matter what comes tomorrow, Gracie will be okay. She's in God's hands. She's His child and He can take better care of her than I can. Sometimes that's a hard thought for me, because I just want to make her all better. But it's not hard for me tonight. James and I have done all we can to help Gracie keep both of her eyes. Now it's time to find out what the Lord really wants to happen. And I have peace with this. Perhaps now I can go and get a good night's sleep (or part of one).

Stephanie

Sunday, January 4, 2009

Questions Answered

Q. Is that James singing on Gracie's slideshow?

I wish I could say this was James singing on Gracie's slideshow but it's Ben Folds. If you've never heard of him you wouldn't be alone (I only know the song because our friends Steve and Janet told us about it). But apparently he's pretty famous, guess I'm officially clueless. Although with a 7 year old daughter we're pretty knowledgeable about High School Musical and like music.

Q. Is Gracie's hair thinning out?

As for Gracie's hair, yes it is thinning out. I'd say she's lost about half of it, but as our kids have so much hair she's still doing okay... relatively.  It's particularly thin in front and she even has one bald patch on top but it's not bad enough that it warrants a shave yet. Her scalp is pretty visible though, but I don't think she'd look healthier without the hair.  That's what we're using as our guide for the shave.

Q. How did my birthday go?

James and the kids spoiled me rotten. We had a great day. Thanks for remembering Mardi!

Friday, January 2, 2009

The alphabet according to Gracie

video

Its a proud day for any father when they hear their child recite the alphabet for the first time. However, I think that this one takes the cake. Note how she has mastered the forgotten art of tongue wagging while singing! Stephanie thinks that she might have a little Maori blood in her, although she doesn't look as mean.