Yah….Soooo….That……

Well, Geli off and got herself a fever which earned herself a trip to the hospital and BAM….here we are doing this whole stupid song and dance again.

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The pre-story goes something like this….

Judah woke up at 2:30am early on Sunday morning and when I picked him up from his crib he felt quite hot. We took his temp and he rocked in at 38.7 degrees Fahrenheit. Not too bad, but definitely a high score….I stripped him down to his shirt and diaper and brought him to our bed to nurse.

I lay there for a minute and then asked Jon to go and check on Geli. Fever’s are not our friends and seeing as we’ve been exposed to pretty much the same things, and because Geli’s immune system is compromised – there’s a good possibility that she could have whatever Judah’s got going on. Combine that with the fact that she’s been coughing and snotting and well…..the odds just keep increasing and increasing and not in her favor…

Jon came back a few minutes later and said that she was at a 37.7F And that started off the not so fun and amazing night of no sleep. There are just so many factors to take into consideration….does she have any neutrophils? Is this a virus? Is this a bacterial infection? Was she just too hot under her million heavy blankets? Jon told her to take a few blankets off and that he’d test her again in half an hour….well, half an hour later it was only down .1 of a degree. Between Judah, who managed to get to a 38.9F and Geli who hovered between 37.2 and 37.8 and one wicked nightmare that happened in the 15 mins of sleep I managed to get (in my dream, Jon came and told me that Josiah had some weird disorder and had 24 hours left to live – if that doesn’t just wreck your night, I’m not sure what will)….I lay there fighting against the stress and fear, only barely holding myself together.

To say it was a rough night, is putting it mildly.

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We woke up the next morning and Jon was supposed to speak at church that morning, but with the threat of Geli spiking a fever, he canceled and stayed home with us. I’m really glad he did because I think the kids would have stressed out more if he had been gone all morning and then left for an undetermined period of time.

Her temps never went over 38F, but they did hover in the mid 37’s and so we finally called the Pediatric Oncologist at the hospital and talked about possibly bringing her in. We decided to wait until 5pm and make a call then. We were just trying to avoid a middle of the night panic filled trip into the hospital. Those suck even more than a somewhat expected or planned visit. We took her temp just before 5pm and it was at 38F on the nose….SUCKS! We waited for another half an hour, took it again and it was up to 38.3F and so it looked like we had our spike.

They piled all the pre packed stuff into the car and headed into Vancouver.

Once they got there, her temps were back down to 37.7F but her counts here borderline low and so they admitted her.

Here at home, we had prepped the kids that this hospital stay may be 16 or so days. 2 or 3 days for a negative culture and then 14 days beyond that….We figured that if we just wrapped our brains around that then anything better than that would be a bonus. Putting the kids to bed last night was a bit of a trip. There was no screaming or massive meltdowns like the last time Jon and Geli went to the hospital, but everyone was wired. We sat down on the couch with a couple of bowls of popcorn and watched Ice Age 2 to try to settle the kids down.

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And then, because everyone was feeling a bit “upset” by this interruption to our everyday events, the 3 kids decided to bunk together in Angelica and Alexandra’s room. Jeremy slept on a fold out mattress on the floor and Josiah was on Geli’s bed and Xani was, of course, in her bed. Unfortunately, the days events were too much for Siah who just would not settle down (dont worry Geli, he didn’t break or wreck anything of yours) and after about 45 minutes….Xandra brought him back down stairs. Seeing as Judah was still sick and feverish and wouldn’t let me put him down, I called my momma to help me out. She ended up just taking Siah to her house for the night and then brought him back this morning. It was such a huge help.

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Judah finally settled around 9:45pm and I was in bed by 10:15pm myself. I read a little and had my own bowl of popcorn and then went to sleep. After the night before I was hoping for a decent night of sleep, but with how off and cranky Judah had been I was expecting him to be up at least half a dozen times. He slept all the way through until 5am and so did I. Thank you, God!

As of this morning, Geli’s counts were low enough to score her some red blood but not completely decimated….just mostly! She also tested positive for a fairly common virus but its also highly contagious and so she been moved from the familiar oncology ward to an unfamiliar cardiology ward. This is great for all the other immuno-compromised oncology kids who wont get sick because of her, but sucks for Geli and Jon because none of the cardio staff know Geli and it ends up being ” a little of out of sight, out of mind” scenario. Basically, the staff of the oncology wards are amazing and obviously know their stuff, and it’s not that the cardio people don’t know their stuff, but they don’t know the oncology stuff and really they have no reason to know it….it’s just not as optimal as being on the regular ward.

So, we are in the most hated waiting period. We must wait for 48 hours from when the blood is cultured to see if she grows any funky bacteria (this is on top of the positive viral culture) and then it all depends on her counts. If she’s too low (as in has no neutrophils – the infection fighting white blood cells) then she’ll have to stay until her body starts making some. The worst problem is that the precautionary antibiotics that she is on, can also lead to her being neutropenic….so it’s a catch 22. She needs the antibiotics to not catch a bug while her counts are low, but the drug that they like to use on her, can keep her counts low…..not fun eh?

So basically we need

-for her to get over this virus,
-for there to be no bacterial infection,
-for her counts to rise,
-for Jon to stay healthy,
-for her to not pick up any bugs while at the hospital,
-for us to be peaceful and calm here at home,
-for us at home to stay healthy, and
-for them to be able to come home soon

Behind the Scenes….

This is what has been happening at our house, last night and this morning…

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We had a great family get together yesterday afternoon and then Xani started barfing. Between last night and this morning she barfed 7 times….and we won’t event talk about what else was going on “behind the scenes” if you know what I mean….This morning she woke up with a fever…..this is so frustrating.

We moved Xani’s mattress into the TV room mostly to keep her and Geli separated. We are desperately hoping and praying that this “whatever it is” will skip Geli.

Over the weekend, Geli had a reaction to a bandaid and we think it’s a combination of the adhesive and the one chemo drug that she’s getting. Something similar happened once before. She has a bunch of blisters on her arm around where they drew blood on Wednesday and it hurts really bad. We have been applying Polysporin and praying that it just goes away and doesn’t cause any big problems. Her counts are high enough that we are hoping that she will be able to fight it off herself.

She did throw up her breakfast this morning though which scored her the right to stay at home today. And seeing as she is fine other than that barf…..I’m saying that it’s chemo related and not sickness related….at least it seems that way.

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Jeremy also woke up this morning with his own “behind the scenes” action and he’s been alternately laying on the couch and laying in the bath this morning…..really not feeling very well at all. He keeps threatening to barf and we have a bowl close by, just in case.

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There is a lot of soup and weak peppermint tea being handed out and we are praying that whatever this is….that it just stops now.

I was SO looking forward to everyone going back to school and Jon and I being able to relax on his one day off and nope…….so I’m pouting and whining a bit. I’ll be ok, but I’ve had enough of vomiting and diarrhea to last me a life time….

While I’m cleaning up vomit and other behind the scene messes…..do you have any humorous life stories to share with me? I’d love to hear from you….and I could really use the laugh today!

Another Chemo Day…..

Geli and Jon went into BC Children’s Hospital today for some chemotherapy.

We dosed her up on some heavy duty anti-nausea meds before she left and she seems to be responding well this afternoon/evening. Not feeling sick or icky, just a little loopy, but we’ll take loopy over barfy, anyday.

We took Angelica into the BC Biomedical Labs yesterday so that we would know what her blood counts were, as her chemo is count dependent. Basically, her counts have to be at a certain level in order for her to continue on with the chemotherapy this round. If they are too low, we must wait for them to come up. If they are low, but not scary low, then they continue on but give her the same dose as the last time and if they are all still amazing, then they continue on increasing the chemo as long as she tolerates it.

We went to Granville Island yesterday and it was such a nice time out. We left shortly after getting Geli’s blood draw and managed to make it there just in time for lunch. We had packed a lunch and had planned on having a picnic, but once we got there it was too cold for us baldies to stay outside and so we found a table inside and ate our lunch there.

After that we wandered around a bit and around 2pm we got the blood work results. Her counts were ok, but her platelets were low and that is something that we had wondered about as she didn’t stop bleeding after she got her blood draw in the morning. She soaked through the bandaid that they had given her and needed a kleenex in the van on the way home. We finally got that under control, but that incident had made us wonder about her platelets and yes….they were low, but not low enough to need a transfusion.

We talked with our nurse, Suzanne and weren’t sure what was planned as far as her moving forward, but we finally got the news that she would be continuing on with the chemo, but that they would give her the same dose as last time.

And so this morning, she got chemo into her spinal fluid via a lumbar puncture as well as two other chemo drugs intravenously through her port.

She’s done well and we are hoping that she continues to do well.

If you are willing to pray for her, please pray:

– that she gets no mouth sores
– that she gets no headaches (this was the worst side effect of the last dose, a week of headaches)
– that she feels well and not sick to her tummy (barfing sucks)
– that she is able to sleep well (she has had quite a bit of trouble with her sleep)
– that she will be able to enjoy the next week leading up to her birthday
– that she will be well and healthy for her birthday party, next Friday
– that her girlfriends will be well and healthy for her birthday party
– that our family is healthy and strong
– that we get some rest (the two little boys have been struggling with sleep)
– that we feel able to manage all that is required of us

Oh, and as a child fighting a life threatening illness, Angelica gets to “Make a Wish”. She is thinking about what she would like for her wish. We would love for her wish to be an amazing one that really blesses her so if you were interested in praying for favor for her, that would be awesome.

The Going’s On Around Here

I’ve been a bit scarce as of late.

I’ve been running at full tilt just trying to stay and keep on top of things and while it’s kind of working – I’ve had little to no “me” time and so that means no blog posts.

Hiding

Hiding

I’ve stolen a moment while the baby is sleeping and yet I feel guilty because if I don’t clean, then I’ll be further behind, but…..I’ve not stopped typing, have I?

In my mind, I can see that the end of this whole year of crap may be starting to settle down, coming to a close. I can see that a new chapter is coming soon and so we’ve been taking steps to prepare for that time.

I mentioned a post or two ago that I had gained more weight than I’m comfortable with and so the first thing that I did was to start to count calories AND to only eat whole foods while avoiding dairy, wheat and soy. It’s still going well and as of today I’ve lost 7 pounds. While it’s not difficult, per se, it’s not “fun” and yet, I’m not interested in being uncomfortable and so I carry on.

It’s amazing how much more energy I have when I eat only healthy foods. In some ways, it feels like a light has turned on in an other wise dark place and I can see more of what I need to do and for the most part, I’ve even scraped together the energy to accomplish what is required right now.

Eyelashes

Eyelashes

Over the past 9 months things have been quite chaotic and with the amount of stress that we are under, there are some important (to me) things that have slipped or been lost in all the stress and chaos. Kids helping out around the house and being a part of the daily chores and just pitching in……all of those kinds of things have slipped over the past 9 months and while the kids have “had” to step up in some ways, in other ways, it’s all just been too much for them.

I know how strung out I’ve felt and so its been a combination of giving them some leniency and also just not having the energy to “make things happen”…..Regardless, I hoped that if I could just hold on….that maybe we might get to a position where I didn’t feel like I was drowning. We are getting close. In some ways, I feel like I use up all of my reserves by about 3pm and then I’m just existing until the eveing. With each day that passes, I gain another couple of minutes, but it always surprises me how things like grocery shopping or a huge melt down with one of the kids can deplete what energy I have.

This is in sharp contrast to last July right after Geli was diagnosed and Judah was born, when even just sitting on the couch watching my kids felt like too much to deal with.

Brothers

Brothers

The week before Spring break we decided to switch things up. The kids were fighting and bickering and it was not cool. We took away all of the kids electronic entertainment and banned them from the computers and video games (we don’t have cable). On top of that, we told the kids that there was going to be an afternoon schedule and that there would be a “treat” if the schedule was kept and everything got done.

The schedule looked like this:

3-4pm Homework
4-5pm Play while 1 kid helps to make dinner (take turns helping)
5-5:45pm Dinner Time
5:45-6:15pm “EVERYONE” helps to clean up the kitchen
6:15-6:45pm Get Ready for Bed
6:45pm “Surprise”
8pm Bed Time / Lights out

Aunty Ruth's Sweater

Aunty Ruth’s Sweater

The kids mostly followed the schedule for the whole week prior to Spring Break and it was awesome. We had a Family Breakfast on Saturday morning and we talked with the kids about how they felt the week went and the response was very positive. The kids ALL mentioned how much nicer the week was because they mostly got everything done and the house was clean and we got to have some family time each night.

This week has not been quite as on schedule because of Spring Break, but we will be right back at it starting on Friday. I always like to get back into the “routine” a few days before school starts up again so that the kids are already “in” their routines and not just forced to get back into the swing of things so abruptly.

I’ve been trying really hard to stay on top of everything and to not let things slip. For the most part it’s working, but I do need to find out how to have some “me” time in the middle of all of this. My milk supply has dropped quite a bit and seeing as we are not even remotely ready to wean, I’m doing all I can to up it again. I made a big batch of Milk Increasing Herbal Tea and have been drinking that and chugging a ton of water on top of that. I’ve also been trying to make myself sit and really rest for a little bit. I’ll admit, that I find that to be a bit more difficult because there is just so much to do, but I’ve already noticed a difference and Judah seems to be a bit happier as well.

Smiles

Smiles

Geli is heading in for another dose of Chemo on Thursday so we’d love some prayer that she’d handle this next dose well. She has 2 more doses, including this one and then we wait for the next round to start…..Every day, takes us one day closer to the end.

Things have been busy, but we are gaining ground, I think?!? It’s slow going, but we will make it through this.

It Strikes

Josiah woke up at 2am last night and barfed.

Jon got him cleaned up and changed his bed and then Judah woke up. These two little boys can play a masterful game of parental sleep deprivation. It’s been just over a week of brutal sleeping habits and this is just the icing on the cake.

Both boys were sleeping somewhat soundly at just after 3am and the next barfing episode didn’t happen until just after 6am, and fortunately for us, that’s when Judah decided to wake up as well.

As we were getting ready this morning, Jon was musing about how he felt better this morning than he has for the past week.

I casually remarked that we were so blessed. We got 3 straight hours of sleep and that’s why we feel so amazing.

Yes……we are that sad. 3 hours of sleep is like heaven. We are giddy over here and it’s all because of 3 measly hours of sleep. Wow, that’s is just so sad!

Bad NightAfter the 6am barfing session, Josiah managed to completely clean out his stomach at 7am onto my bed…..

Here is the stripped bed and his bowl and a surprisingly chipper little guy.

Right now he is laying on the couch next to me watching Max and Ruby……and can I just say, Ruby has the MOST annoying voice.

We are desperately praying for this bug to skip Angelica (and the rest of us)….Siah has a bit of a fever and a fever is an automatic trip to the hospital for Geli and so we are really, Really, REALLY not wanting her to get sick right now.

So Grown Up!

Jon and Geli have headed into BC Children’s Hospital again today. She has chemo today and tomorrow. She’s been feeling a bit off and we are having to give her more meds to combat the nasty feeling. It’s not fun. Her spirits are doing well though….and for that we are so thankful.

All Dolled Up

A little while ago we had talked about her getting all dressed up when she had to go into the hospital and then seeing if people recognized her and today was the day. She looks so grown up, doesn’t she? Those are my boots and my sweater. Man, I remember when I could fit into my mom’s stuff and it was right around this age….12, 13, 14 years old.

Angelica is just a few weeks away from turning 14….April 4th is the big day. So fun! She’s been planning her birthday for a few months now. She LOVES to plan and organize and she’s been working on fine tuning all the plans for a while now. She’s really looking forward to this party and I love that she’s looking forward to something with so much anticipation.

15 out of 56

Well, we are 15 days (2+ weeks) into Delayed Intensification 2 which is 56 days long (8 weeks). This is the second to last stage before Maintenance. So far, Geli has had a Lumbar Puncture, one dose of Intrathecal Methotrexate (into her spinal fluid), one dose of Peg L-asparaginase divided into two shots (one in each thigh). She has had two doses of Vincristine and 2 doses of Methotrexate (both of those into her port in her chest).

ColoringShe has been doing pretty well. There have been some down times, some barfy feeling moments, and a lot of great moments. Some times the chemo makes food and water taste “off” and that sucks. Sometimes, it’s difficult to sleep and yet regardless of how much sleep Geli does get, she feels overly tired most of the time.

Her body is working overtime to heal and process the poison injected into it and she’s fighting so hard and most definitely winning this race.

Geli has been at school all last week, except for Thursday when she had to go in for her last chemo dose. She has no chemo this week and we are planning for another great week at school.

Sweet BoyAs her parents, we are thrilled to see her attending school, hanging out with her friends, just being as normal as is possible in this crazy situation.

She is working hard on her grade 8 school work and while she’s not done as much work as is required from her school mates, she’s done really well on keeping up to date with the essential assignments that her teachers have given to her.

Angelica and a friend scored a perfect mark on an oral presentation that they have been working on over the past month or so. That was definitely a bright spot over this last week.

We’ve been out walking most days and the exercise and fresh air are wonderful. You don’t realize how much you take your health for granted until you spend a huge portion of a year not feeling well and laying on a couch and then you realize that even a simple walk requires almost more effort than you have to give. BUT….summer’s coming and swimming is important Siah & Gelienough that we are trying to build up strength so that we will be able to swim without needing a life jacket or having to rest after 5 mins.

We are really, REALLY looking forward to summer. Angelica will be on Maintenance and we will be defining a new normal and this summer will be a most welcome break from this past year. I think that we are all looking forward to a bit of a relaxing summer.

I’ve been trying desperately to stay on top of the house and have been running at warp speed from morning till night and unfortunately most of the night too (thank you very much children). I’ve had almost no down time and I’m desperate for summer with no homework, a bit more of a relaxed schedule, once a month visits into the hospital, no deadlines……I can’t wait.

Snow DayWe have managed to turn our house up side down and I think its a good thing, BUT…..it’s not without it’s challenges. We did move our bedroom down to the basement along with the two little boys. Geli and Xani are up in what was the master bedroom. Jeremy is still is his room and we’ve moved the “TV/Rec Room” up to the big room that used to be Siah’s. I will try to get pictures soon, but so far this particular room arrangement is working well.

Xani is still struggling pretty hard and it’s difficult to watch her struggle and hurt.

Jeremy is rocking his Lego Root Camp and just being Jeremy. Recently, we tweaked the meds that he’s taking and it’s made a great difference.

ColoringJosiah is 3 years old and while the whiny voice and testing of behavior is not the most fun….he’s doing really well. I believe that he’s settled greatly from the initial chaos and while there are still things that we can and will work on with him….he’s doing SO much better. We’ve been trying to color a bit and he’s loves to spend one on one time with anyone. He stresses a bit about not knowing “how” to color and wants to have one of us color “with” him by putting our hand over his, but we keep practicing and he’s getting a bit more confident that he “can” color all by himself.

Judah is getting so big and I can hardly believe that 8 months have past us by. While I’m still not eating wheat (he seemed to have some gluten issues), soy or dairy….the intestinal issues that Judah was dealing with seem to have settled and he is doing much better. I have never really had a baby who has eating issues and yet, Judah is giving me a run for my money.

He will eat rice puffs or rice cakes or potato puffs any time any where, but try to give him some thing that might actually have taste or nutritional value in it and he clamps his lips and crosses his arms in front of his face and uses his arms in a windshield wiping motion to knock the spoon out of your hand.
Hello
I’ve tried to see if he will feed himself and it’s very hit and miss and so I’m not stressing about it too much because I don’t want to “create” a HUGE issue. He’ll eat when he eats and seriously…..it’s not like he’s wasting away, eh? He’s quite the chunk!

He has the sweetest personality and is so happy and squish-able and lovable and we are just so thrilled he is ours. (I just wish he’d sleep a little more consistently – he can….it’s just very hit and miss and I think that more sleep would make this whole situation just a little easier to handle.)

All said, we are doing okay! I wouldn’t say that things are the MOST AMAZING EVER, but we are surviving. One day at a time, we are making it through this…….A lot of that is due to you and your prayers, encouragement, love and support……we are so thankful to you all.

Oh Man….

well, life just keeps on flying by and I keep thinking I should post something and then, I have no energy to do so….

In bullet points:

– Geli started Chemo on Monday
– She got chemo shots into her thighs on Tuesday
– She went back to school on Wednesday (hopefully for a good portion of the next month)
– Jeremy is LOVING the newest Robot Camp
– Jeremy will do ANYTHING for a Lego mini fig (He cleaned the kitchen spotless is less than 15 mins and that is basically a Christmas Miracle)
– Xandra caught up on ALL her homework (because I bought the latest Maximum Ride Series Book and wouldn’t let her read it until everything was up to date)
– Geli is ALMOST caught up on her homework but she was really, REALLY behind.
– Geli is having a hard time adjusting to a “normal schedule” (She’s finding it hard to get to sleep at night and as a result is overly tired in the morning making mornings a bit tougher than they should be)
– I saw the psychologist at BCCH yesterday and cried too much (now I’m just trying to process everything and trying to figure out what I’m going to do moving forward)
– We are contemplating our living arrangements and trying to figure out is there is a better room allocation that would work for us.
– Jon’s scheduled appointment to give blood is tomorrow morning.
Megamind comes out on DVD today and we are planning to watch it tonight as a family.
– Baby turned 8 months old yesterday and his cousins came to play and I have a bazillion photos to plow through today.
– I love my sisters. Am thinking of them lots today. They are AMAZING!
– I am having too many “I should be doing…..” thoughts and it’s wrecking my life….I need to think through and just “DO” and not get so caught up in what I should be doing. It’s harder to do than it might seem.
– About the previously mentioned room allocation….would you consider turning the basement into the “master bedroom”? Why or why not? Any thought?
-And with that I’m out….I’ve got a mountain (5 large loads) of laundry that I need to fold. Ick!

Oh Hi There……

So…….

It’s been a week, eh? Well, I will try to sum things up because I have only a few seconds and then I’m headed to bed.

Last Monday, was Valentines Day and we were just carrying along “trying” to make it through the days until Friday when Jon and Geli would be coming home. We were in the count down and while the kids were upset and falling apart that we hadn’t seen Jon and Geli in over a week…..it seemed like I was coming down with the plague that had swept through our family. I had managed to fight it off until then and I think that 10 days of “little-to no sleep” managed to tips the scales in the “virus’s” favor and my nose started running.

Later that afternoon, Jon messaged me to let me know that because Geli’s counts seemed to be coming up…although entirely WAY. TOO. SLOWLY. that there was talk of her being released on Tuesday and being put on an antibiotics that was given only once every 24 hours. That would have meant that they would come home and spend their days “hanging around” at home and sleeping at home and having to make a 2.5 hour round trip in and out of the hospital for a 15 minute appointment.

But to have them at home and to have them occupied and away for only 2.5 hours every day……it was such an amazing concept, BUT…..

We wouldn’t know until the next morning after her counts had come in AND after rounds….so I couldn’t say anything to the kids.

I had a Dr.s appointment that morning for Judah to check on his chest and his breathing and then I would either head into pick them up or go home and wait for a few more days.

The appointment for Judah was an absolute gong show and I might possibly share about that later, and just before we got taken into the exam room I got a call from Jon and Geli that I needed to come and get them.

Basically, we drove in to pick them up and came home and we’ve been going non-stop ever since.

It’s been ridiculous and insane and I really should be cleaning the house because it’s a disaster or sleeping because I’m exhausted but it’s been too long and I wanted to at the very least post a quick update. I’m hoping to have a bit more time to catch up on here soon, but we are kind of just trying to hold things steady over here.

Angelica just started her next phase of chemo today. We all drove into the hospital just so that we could “be” together. It was inconvenient and not the easiest, but it’s hard to watch Geli and Jon head out for a WHOLE day when we get left at home (the kids had a day off school today).

They have to go in tomorrow for the intramuscular shots of chemotherapy into her thighs and they’ll be leaving at 10am and not home until 4pm. It sucks, but then she’s “off” for the next 10 days after that. I will be going in to the hospital on Thursday to see the psychologist. Things have been so difficult around here and I just don’t know how to help the kids and I don’t know if what we are going through is “normal” for families going through cancer and if it is….how do we keep going on and on and on and on…… until this is all over.

I’m just feeling overwhelmed and I don’t know where to go from here.

Alright, well….we are moving into the verbal diarrhea stage of things and I really need to go to bed….so I’m off.

A Day In The Life…

We’re in our last week of being in the hospital for this cycle of antibiotics, so I thought I would share with you some of the good times and some of the bad times this trip so far.

Good Times:

Here and There
Patti and I have both had our BlackBerries die this year and it happens to be a contract renewal year, so we opted to move up to the iPhones. I did it because I am a Mac geek and Patti did it because of the 5 MegaPixel camera (shes all about the photos).

Patti decided to start sending me Hipstamatic photos of everything going on around the house, and asked if I would do the same, so we traded a lot of photos. It was fun and helped us feel a little bit closer together.  Here are some of my favorites:

Patti and Judah at rest
Patti and Judah at rest

Xandra ready for Red Day at school
Xandra ready for Red Day at school

Gelica Making a Silly Face
Gelica Making a Silly Face

Siah in a bath
Siah in a bath... what a face.

Cooking
Gelica doesn’t really like the hospital food. Its a lot better than any hospital food you would get at an adult hospital, but still, it isn’t home cooking. When we found out that we were staying for 2 weeks, we set to work to “suggest” that they give us a room on the ward with an actual kitchen, borrowed a mini-fridge, made a menu plan and sent mom a shopping list.  The end result was a nightly parade of nurses coming to see where the smell of heaven was coming from.  So far we have had, among other things: roast chicken with steamed veggies, gravy, and mashed potatoes, quesadillas with seasoned chicken and sauteed veggies, home-style spaghetti… I think we are finally having crepes with fresh blueberries tomorrow am.

Cooking our own food, helps to pass the time, gives us exercise going to get the groceries, gives us better nutrition and it has flavor (which the hospital food doesn’t)

Geli Cooking
Geli Cooking

Cousins
In the absence of Patti and Alexandra and Jeremy and Siah and Judah, Aunty Michelle and Aunty Debbie and the cousins came in to make sure we had visitors.  Its always nice to be with family, and missing our own family made their visits even sweeter.

Aunty Chelle and the kids
Aunty Chelle and the kids

Aunty Debbie and Jack
Aunty Debbie and Jack

Gifts and Surprises
I know that people are praying for our family and there are a lot of people that have done so much over this almost 8 months so far. But it never ceases to amaze me when we receive cards, or balloons, or gift baskets from unexpected places. It is such a huge reminder of how surrounded and covered we are.

Gift Basket

Bad times:

Separated
As you can read in my other post, I like to be with my family and we function well together. Being apart just really sucks! I hate sitting here, feeling somewhat bored and hearing about Patti having a bad day and not being able to do anything about it.

Skyping
Skyping

Consoling over the phone
It was a shock to my kids when they heard that we needed to head into the hospital right away. It was more of a shock when they heard that we needed to stay and get further treatment. It was more of a shock when they found out that we were here until the 18th.

Add to that, that they were going to come in and visit on the first weekend… but someone was sick, so they would come in on the Wednesday… but someone else was sick, so they would come in on the Friday… but someone was still sick, so Saturday, or Sunday for sure… but now someone else was sick… so maybe we could just send Xan in for a sleepover on the Monday… but someone was sick.

Each one of these changes in plans has been an emotional event for Xandra and each one compounded on the others. I have had many conversations with my daughter now, where I talk to her on the phone and let her cry.  I don’t like that…. at all.  She is a precious girl and REALLY loves her family and wants us all to be together; she draws life from it. Having us apart leaves her gasping for air. Definitely bad times.

Nausea, Nighttime Vitals and Over Analysis
Coming into the hospital means IVs and medicine. It means that Gelica was sick, is about to get chemo (which normally means she is about to feel sick), or is going to have to at least smell the hospital food (I think there is some kind of conditioned response to the food cart from when she was really sick in here before, cause it doesnt small that bad, but she dry heaves every time it comes close). I don’t like watching my angel have to deal with nausea… its too much and it just ain’t fun.

Another thing that we are guaranteed during each visit is vitals about every 4 hours. that means temperature, blood pressure, etc. at midnight and 4:00 am.  Add to that a bunch of machinery that clicks and beeps and has bright lights… its never really a restful sleep in  here, so we might be bored and have time on our hands, but we are still living with that over-tired feeling. (I won’t complain too loudly cause I think I’ve had about 100 times that amount of sleep that Patti had.)

Over Analysis is when you are constantly being checked, everything goes under the microscope and everything is a potential problem, or requires a conversation with a nurse, or could be a set-back to recovery. At home we wouldn’t have known that her temperature fluctuated by more than a degree during the day, and that would have saved us the conversations about whether there was a secondary infection and, and, and… its exhausting.

Reality Checks
On this ward, it is somewhat easy to focus on our own road ahead. Its not an easy road, but we will all be together, healthy and happy in the end. When you run into other parents here, some are on a similar road and so you compare stories.  Some have children with incurable cancer, or severe complications, or you find out that a kid that you met a couple months ago has died. This is a reminder of what we fight and what we are beating.

This week a teenage boy was brought in that has been in and out of the hospital for the last few months with undiagnosed illness. They have thrown every test imaginable at this kid and they have no idea.  He went home a few days after we got here, but then had to come back.  He is currently in a coma on life support.  I got to pray with and encourage the mother.  But these “reality checks” are hard and humbling.

We are thankful for how far we have come, but this is a day in the life of a children’s hospital.