Gelica – Page 7 – xangelle.com

Unexpected Blessings

Back in June/July of last year, just shortly after Angelica was diagnosed with Leukemia, my Aunt, Uncle and Cousins got together and bought Geli an iPod Touch.

It was the most amazing blessing EVER! (to those reading this….it’s not that your gifts weren’t amazing too, I just happen to be mentioning this particular gift for a particular reason that you will soon see.)

Angelica spent hours, and Hours and HOURS on her iPod. Playing games, and listening to music and watching movies and looking things up and well, it provided some amazing distractions at times when distractions were so SO needed. She never went ANYWHERE without her iPod.

One day a few weeks ago, Angelica went to school and had her iPod tucked into the outside pocket of her backpack. Somehow, someway, her iPod got stolen out of her backpack. She was SO upset. Its upsetting when the innocence and naivety of your world is stripped away and you realize that the world is not the safe place that you might have thought it was. To have something of yours stolen from you……it’s a rude awakening into reality! It’s even more upsetting when that “item” has memories and key events in your life, attached to it.

We asked if there was any way possible for the school to make an announcement about her iPod being stolen. Geli checked in at the office a few times, but no one had turned anything in!

We got a call two weeks ago from one of the teachers who mentioned that the WGSS Grads were fundraising to get Angelica a new iPod.

We were shocked, in a good way! Once again, we are so touched and amazed at how this community has rallied around us and supported us and loved us…..it’s overwhelming, in such a very, very good way!

I got the call last week that they had the funds in and were able to purchase a brand new iPod for her. This is even an upgrade from the amazing iPod that my family had already got for her. This new one has some new features that her previous iPod didn’t have, like a camera and the ability to Facetime.

On Friday, while she was at school, the principal came down to her Math class and got her out of class and took her down to the English 12 class. We hadn’t told her about what was happening and so it was a surprise for her.

She was BLOWN away! After they presented it to her, she texted me to let me know what had just happened. I had cried when the teacher had called to let me know and I cried again when she texted me and I’m crying now, just thinking about it. She was so SO excited. It was such a HUGE blessing for her. She had basically resigned herself to the fact that her iPod was gone forever. We don’t have the ability to replace it right now and so………….well, that was just the end of it!

The class presented it to her, and they even had it engraved for her. How amazing is that?

In the middle of this crazy, horrid weekend of pain, this blessing could not have come at a more opportune time. In the better moments, she has loaded the iPod with all of her previous apps and music and added new movies and music to it. She’s been able to watch movies while pacing the house or laying in bed or on the couch. She’s been playing games to distract herself and quite honestly, it has been the perfect gift that came at the perfect time.

Thank You! Thank you for giving, for sacrificing, for caring for and supporting!

WGSS Grads of 2011, you have made a HUGE difference in this young lady’s life. She (and we) will never forget you or your kindness. You have given from yourselves and invested in the future. You should be SO proud of yourselves. I am so thankful to you. May your futures be bright and full of hope, peace, joy and love; and may you be abundantly blessed in such greater measures than you’ve given out.

On a Scale From 1 to 10….

It’s been rough around here this weekend.

Angelica finished her last dose of the steroid that she was on on Thursday night. She woke up Friday morning a bit achy and I kept praying and hoping that she would somehow miraculously escape the brutal joint pain that she experienced that last time that we went through this round.

It’s been a rough couple of weeks and we are just trying to keep focused on the fact that end is so close. She has one more “set” of chemo to go through and then she is on Maintenance.

Maintenance is the long term chemotherapy designed to destroy any lingering cancer cells that may possibly be hiding in the body so that it completely eradicates any presence of the disease in the body. It is less intense that the previous chemotherapy and usually lasts about 2 to 3 years.

The steroid is a pretty brutal drug. It has it’s benefits, but some of the side effects are pretty tough to deal with. The few side effects that Geli struggles with the most are:

– a diabetic state
– insomnia
– wicked joint pain

These past 3 weeks have been tough because we’ve been attempting to control her blood sugars by food and exercise and she’s done really well. The biggest problem is that it’s something that requires actual effort and a discipline on her part to not just eat whatever she wants. The hassle of having to deal with it wears on her after a while. Especially because the steroid causes an increase in her appetite and what she wants to eat are carbs, but they are also what cause her blood sugar to rise. Typically after 2-3 days of being on the steroid, her body seems to recognize that it needs to produce extra insulin and she can relax a bit on being so tight on carb control. This last dose was a bit tougher than that…..I think her body is tired. I think that emotionally, she’s tired and that mentally, she’s exhausted. It took until the last day on the steroid for her body to catch up and stabilize…..not cool or fun!

I know that Jon and I are noticing that as we get closer and closer to the end of this intensive stage that we are getting more and more tired. We know the end is coming and it’s like the past year is gaining on us and we are feeling like we are being swept under. We’ve fought the exhaustion for so long and we just need to stay strong for a little bit, but it’s harder and harder to keep on.

If we’re feeling like this, I cannot even fathom what she’s feeling like.

Anyway, she’s slept so poorly over the past 3 weeks and has pretty much slept about 10 hours in the past 3 days. Even with medicine….and the lack of sleep is just compounding everything. She has said that the pain is at a 4 out of 10 and it’s mostly just in her knees although her shoulders and wrists and lower back hurt. Last time around, she indicated that the pain reached a 6 or 7 out of 10 and she had more joints that ached. So, if the pain is less intense and fewer joints are involved then she is just worn down and less able to “handle” it all. And that sucks!

We’ve gone the medication route to just try to wait the time out.

And even that only helps to take the edge off, it doesn’t remove the pain completely.

She did sleep from midnight to 4:30 last night but then has been up since then. Sometimes walking and moving the joints can help and this morning from 4:30am until 8:30am, she paced the floor while watching two movies. And at that point, she was just exhausted and asked for more meds and went up to take a bath until they kicked in and right now she’s sleeping.

We looked at her journal from last time around and if this time follows the same timeline as last time, then yesterday and last night should have been her worst times…..today should be less intense with tonight being better than last and then every day should get better from here on out.

The second half of this round is supposed to start on Monday or Tuesday May 30 or 31. We are just going to be upfront and beg for your prayers over the second half of this stage. At the end of this stage that we are coming up on, Geli has ended up in the hospital every time. It’s a pretty intensive chemo treatment and knocks her counts down to nothing, which puts her at risk of infection. It would be amazing if she managed to stay out of the hospital this time around. That is what we want. We want for Geli to make it through this next round of chemo and to not pick up any bacteria at all.

She has an amazing summer planned and we are wanting to just move forward smoothly onto the next stage of our lives.

I want to thank you for all that you’ve done. I know that I’ve not posted as often and really, things have been a bit crazy around here. There is so much more going on that I’ve not had time or energy to share. Just know that in all my busy, crazy, down, frustrated times…..the things you’ve done, the words you’ve sent, the prayers you’ve offered….they come back to my mind and give me strength and encouragement and make me smile.

Thank you for walking this journey with us. You have NO IDEA how much we’ve needed you and are thankful for you and appreciate you!

Keeping On

I dropped Geli off at school this morning just before 9:30am and I just picked her up…..just after 10:30am. 1 hour…yee haw!

She called and said that she had a headache and was seeing spots and that the room was shifting and spinning….sounds like fun. Migraine, anyone?

This is her week “on” the steroid and she’s definitely “off”.

Her blood sugar levels have been a bit harder to control this week as opposed to two weeks ago and while she is doing a good job…..it’s been a lot of work and is not fun at all.

You know what it’s like when you cant have something and it’s all you can focus on…..yah, her and her carbs…..they are quite the pair this week. It’s like when you are dieting and all you can think about are the high calorie, high sugar crap; and salads and fruits and lean cuts of meat just don’t quite cut it….yah! It sucks!

She was awake this morning at 6am and couldn’t get back to sleep. Apparently she came down to our room and got Judah when he woke up at 6:30am. I say apparently, because I didn’t hear him wake up or her come to get him. Nice! Jon knew though….so there’s that. She brought him back down at 7am and so we got to sleep in for an extra half an hour this morning. How nice is that?

After the kids went to school, Geli lay down on the couch and drifted off to sleep. She didn’t have a class for first block this morning and so I just let her sleep. I woke her up just before 9:30am because that’s when her next class was.

It’s so hard to know what to do. Do I just let her sleep or do I wake her up and make her go to class. On one hand it’s good for her to sleep and rest and heal, on the other hand, I want to try to keep to a “typical” schedule as much as possible.

We keep encouraging her (and all the other kids) to plan to do things as normal as possible. Plan to get up in the morning. Plan to get ready for the day. Plan to go to school. Plan to stay awake in the daytime and to sleep in the night time. Plan to be independent and responsible for yourself. Plan to be happy and healthy.

I want her to be able to be as normal or typical, as possible. Then, when there are the times when she just can’t do things for herself or if she need to sleep or stay home from school – then it’s okay! I want her to try her hardest to LIVE! And then to ask for help when she needs it. I don’t want her to learn to be dependent on us for everything.

It’s so easy when your child is sick for a long period of time to start to cater to them. It’s easy to get in the mind set that they are just a “poor baby” who is so hard done by. It’s easy to treat them as if they deserve to have everything done for them in an effort to “make up” for all the hard, tough things that they are dealing with.

It’s a fine line to walk between caring for, pandering to and continuing to train your child.

We’ve been at this for almost a year and while I realize that one year out of a life time is not that long of a time….there are things that are important to me. Continuing to train Angelica (and our other children) in appropriate ways for the circumstances is really important to me. Life is full of ups and downs and learning to carry on in the middle of it is so important.

We encourage Geli that if she can do something for herself – that she should. Get up and get yourself a glass of water if you want one. Get up and that book that you wanted or a snack for yourself. If you can’t get up and get yourself one, then by all means ask…or explain that you probably could, but that it would require more effort than you feel that you currently have to give, and ask for help. This also allows us to gauge where she’s at physically, mentally and emotionally. She may just feel too exhausted to try and that’s okay. That’s a part of this whole process. There are good days, excellent days, tough days and really REALLY tough days.

But, that is also life!

In life, there are good days and excellent days and hard days and really, REALLY bad days. I think it’s important to live and enjoy your good days and to plow through some of the tough days and to learn to admit when you need the help and….. to ask for the help.

We are here to help Geli. We are here to encourage her. We are her family and we love her. We can see when she’s actively choosing to participate in life and to be responsible for herself and even giving out of herself. On the flip side, when she is struggling, we are right there to help and encourage and love and to give back into her.

These are some of the life lessons that I feel are so important. I feel that it’s important to not see her as a “poor baby”. I feel its especially important for her to not see herself as a “poor baby”. I feel that it’s important to recognize that she has had (and is having) a tough year. I feel that it’s important to validate when she is struggling. I feel that it’s important to encourage her to keep on, keeping on. I feel it’s important to teach her that this is her life. She can recognize that this is a part of her journey (just a small part…) and accept it for what it is OR….she can feel that she’s been given an unfair lot in life and be consumed with how much better everyone else’s life seems or appears. If she can learn to accept that this is her journey, she will be able to find happiness within herself as she carries on. If she focuses on how bad she has it and how good others have it, she will be oh, SO miserable.

For the most part, she “gets” this. She is an amazing young lady and I’m so proud of her. This is not an easy portion of her life’s journey, but she is walking this road with courage and grace. I’m thrilled to be able to walk along side her, encouraging her, cheering her on……loving her!

ps. Geli has no more chemo until Monday May 30th…..this is wonderful and yet at the same time, the 3 doses of chemo that she has just had will be hitting their high points of effectiveness within the next week and a bit.

Here are some prayer requests for the next week or so:

– No joint pain when she goes off the steroid this time

– No infections of any kind

– No Headaches (she’s currently dealing with this and it sucks)

– For Health…that Geli would really be able to enjoy the next 2 weeks.

– For Rest for all of us…..

Thank you so much! We have been so encouraged by your love and prayers and are grateful for YOU!

Verbal Diarrhea

I’m not sure what the deal is, but today…….I’M TIRED!

I would give just about anything to be able to crawl back in bed right now, but that’s not an option and so instead of feeling sorry for myself – I’ve got to somehow give myself a shake and carry on with my day.

There is so much that I really should be doing and none of it that I really want to do….how’s that for incentive for ya?

Jon and Judah up at Harrison Hot Springs! Love his hair!

Geli had her second dose of Chemo for this round this past Friday and she seemed to handle it a bit better than the week before. It could have something to do with how we’ve managed the meds/nausea, but she felt less sick that the previous week. This is the first “off of the steroid” week and while she didn’t feel as nauseated, she was in quite a bit of pain.

I mentioned before that when she is coming off of the steroid, that her joints can end up hurting quite badly. She didn’t feel bad enough to want to take the codeine or morphine but the constant pain is wearing…..She felt that the pain level reached a 4 out of ten, on the pain scale level. Which I think is enough to have taken something, but she didn’t want to, and so she didn’t.

Fortunately, the pain from her joints has mostly subsided and aside from the random wave of nausea and the odd headache, she is doing quite well. She was at school part of yesterday and has gone again today. Our Doctor figured that she may be able to attend quite a bit of this month, which is a nice bonus as we figured that her counts would be quite low for most of this round….but hey, we’ll take the higher counts as it means more protection from her immune system – YAH for that!

I’m extremely frustrated with Judah….he is the WORST day time napper that I’ve ever had. He might go down for al of 10 minutes and then he’ll wake up crying and screaming. I know that he’s not ready to wake up and yet…..he doesn’t want to settle again and ARGH…..A cranky, crying, overtired baby is not fun!

Neither is a cranky, crying, overtired mom…..

We have a meeting tomorrow at Jeremy’s school to talk about him, and really – there is a lot to that part of the story and I don’t have the time or the energy to get into it….and so, I’ll just say that we are still moving forward with Jeremy and that it’s a tough journey at times, but man, if he isn’t just a lovely little boy with such a gentle spirit. I sure love him!

For the most part, Xandra is doing AMAZINGLY WELL. We took her to the pediatrician about a month ago, I think? and he is treating her for ADD/ADHD and the difference in her is UNBELIEVABLE! She is looking and acting and producing work a lot more like the Xandra from years gone by…….It’s frustrating that this all came about at the same time as Geli’s diagnosis and treatment and I wish that we’d been more on top of things because I believe she went too far down a road that she never needed to go on. We could have caught things sooner. I’m not sure if I mentioned this before, but ADDD presents itself differently in girls than in boys. Typically, girls are diagnosed around 12 years of age when organization is a bit more complicated (as in when Grade 7 teachers start to train the kids to be able to handle the High School organization structure). For us, we were not sure if Xani was just stressed about the Cancer stuff or the family stuff or school stuff or how much of all of the different things played into her stress levels, but to give her some medicine so that at the very least, she can organize and structure her life better……it has made a HUGE difference. Xandra is a very bright little girl and has always done extremely well in school. This year, she has not shown even a part of how capable and intelligent she is and we just wrote it off to the chaos and stress (which I’m sure are contributors) but in the past couple of weeks since putting her on the meds…..her marks have come up drastically and she is better able to plan out her work load….it’s made a drastic difference in both her schoolwork AND in her stress levels. And we are SO thrilled that she is doing better.

The Teen Oncology Group is having another function tomorrow night and they are probably going to Theater Sports. So, Jon and I (and Judah) are headed into town for Wednesday evening. I’m not sure what Jon and I are going to do……any suggestions? We are looking at being there probably around 5pm and having to pick Angelica up around 8:00pm.

If you are local or know Vancouver, what is your favorite thing to do?

For the Fun of it

Jon just posted a status on Facebook that said something about Geli heading into the hospital for her second dose of chemo and the other kids having today off school (it’s a Professional Day) and then he said something about us all going into town together “for the fun of it”.

Which, if you’ve ever taken 5 kids ranging from 14 to >1 anywhere, you know that the “fun” that is spoken of is less “fun” and more “stressful” than anything.

I guess if you are going anywhere, Children’s Hospital is a good place to go, in case anything goes wrong or…you know, for kids to be able to just be kids?

Not that I’m expecting anything to go wrong, but wrangling children is almost as fun as I’ve heard wrangling sheep is, and if it weren’t for the fact that we need to get passports in order to be able to even apply for Geli’s Wish, then we’d be staying home today.

In the Wish package, we were given a coupon for Blacks to get Passport photo’s taken and the closest (or most convenient to us) Blacks Photography is……..in Metrotown. Sweet!

So, we wake up this morning and prepare for chemo and pictures….how fun!

We’ll be hitting the hospital first and hopefully we’ll be in and out of there within an hour. We do have to wait for Geli to get a blood count so that we know if she needs a transfusion or not, but I’m not guessing that it’s necessary. It usually isn’t after only the first week of chemo….but as every week goes by, the likelihood of her counts going too low increases…..the actual chemo doses should only take less then 10 minutes…it’s the waiting…..oh the joys of waiting…….

And so today…..we head in and I’m really hoping that it’s more fun than it should be!

Delayed Intensification Stage 2

Angelica started the final Intensive stage of Chemotherapy last Friday April 29.

Her and Jon headed into BC Children’s Hospital for her 10am appointment and aside from being grouchy because she couldn’t eat – it was a fairly uneventful morning.

She wasn’t allowed to eat because she had a procedure where she is lightly sedated and they don’t want her to possibly vomit and then choke on it…and so, no eating or drinking 6 hours before the procedures. Typically she has these procedures, first thing in the morning, but for whatever reason, this one was a bit later.

So last Friday she received Chemo into her spinal fluid (via a lumbar puncture), and two types of Chemo intravenously into her port. One of them she seems to tolerate with no problem and the other she tolerates ok, but not as well. She is also back on a steroid for a one week on, one week off and then repeated….

The steroid can cause a host of issues – like a diabetic state, increased appetite, flushed cheeks, increased mood swings, insomnia and the worst one for Geli is that (last time) in the first week off, she felt some pain in her joints and then in the second week off she was in a LOT of pain for about 4 days. Even morphine and codeine didn’t take away the pain it only just barely relieved it. Some kids are hospitalized because the joint pain can be so bad…..we are definitely praying that is not the case this time around and that she is able to tolerate everything this round.

Angelica basically spent the weekend on the couch. She felt pretty rough on Saturday and Sunday and by Monday she hadn’t really slept all weekend and was crying. Instead of sending her off to school, I sent her back up to bed with a gravol to try to get her some sleep. She rested a little but didn’t get enough sleep. Stupid steroid!

Then on Wednesday she received the chemo shots into her thigh muscles and that appointment is a looooooong boring, 4 hour appointment. It takes about an hour to get signed in and to process the request for the chemo to be delivered to the clinic. They won’t process the order for the chemo (through the pharmacy) until the patient is physically signed in, and then after the injections, she’s got to hang around the clinic for an additional 3 hours just in case she has a anaphylactic reaction to the drug. Apparently its a possibility with this drug and the more times that you receive the drug, the greater the likelihood that you might possibly have a reaction.

So she goes in and hangs out and watches movies for 4 hours. Fun, fun!

She felt pretty good today and she only has 2 more doses of the steroid and then her week off starts.

The way this stage works out is that there are two parts…..The first 4 weeks and then the second 4 weeks…

The first 4 weeks looks like this….

Day 1 – Chemo via LP and IV
Day 4, or 5 or 6 – Chemo into her thighs
Day 8 – Chemo via IV
Day 15 – Chemo via IV
Day 22 nothing

first half is over…..

Day 29 – Chemo via IV
Day 30 – Chemo via IV
Day 31 – Chemo via IV
Day 32 – Chemo via IV

Day 36 – Chemo via IV
Day 37 – Chemo via IV
Day 38 – Chemo via IV
Day 39 – Chemo via IV

Day 43 – Chemo via IV and Intramuscular

Day 50 – Chemo via IV

and then we wait until Day 57 or until her counts come up enough to start Maintenance…..

There are the steroids and the oral chemo that I’ve not mentioned and well, really it all “seems” like a lot and that’s because it is a lot to deal with and keep straight, BUT……..we’ve done this round before and we are trying to stay focused on the fact that every day we finish, brings us one day closer to the end of this intensive year of chemotherapy.

Today is day 7…we have one week under our belts with only 7 weeks of treatment to go……

Angelica had a decent day today. She stayed at home because she needed to get a bunch of work done for her Homestay Teacher. The biggest challenge today is managing her blood sugar levels by food which is complicated by the fact that all she wants to eat are carbs and high sugar foods, add in the steroid which makes her feel hungry ALL THE TIME and coming up with creative ideas for what to eat is pretty much a full time job right now.

She has her next trip into BC Children’s tomorrow morning.

We are asking for you to pray as Geli goes through this last round before maintenance. She needs to be able to stay positive mentally and emotionally as we make our way over the next 2 months. She is tired. This has been a very long 10 months and just before she started this round she was feeling pretty good. She was feeling very normal, probably the most normal that she has since this journey started and to all of the sudden feel pretty crappy again….it’s a hard blow to take.

And also that she wouldn’t feel so wiped this weekend. It would be nice for her to be able to enjoy the weekends with our family.

Thank you for all your support and prayers. We would not be where we are at now without all of your love and support and encouragement and prayers.

We are SO THANKFUL!

When you wish upon a star….

Guess what came in the mail on Monday?

Can you guess?

It’s probably pretty difficult without any clues, isn’t it?

Well, here is a hint….actually it’s not a hint…it’s just what came in the mail on Monday!

Children who have a life threatening illness are granted a wish.

Angelica, unfortunately, is eligible to receive a wish. I wish for all the wishes in the world that she were not eligible (as in, she was not dealing with cancer and the resulting chemotherapy) and yet she is. And so she gets to wish….

She has been referred to the Children’s Wish Foundation and on Monday the application came in the mail.

The different Wish Foundations are amazing.

If you have an opportunity to give to a Children’s Wish Foundation, please do……think about us. Think about all that we’ve gone through on this crazy journey and all that we have yet to go through. It’s personal. There are so many kids going through life threatening situations and to have a “wish” to give you hope, to brighten your day, to encourage you to keep going when things are tough, to put a smile on your face when you least feel like smiling…..it’s a powerful thing.

I never look at opportunities to give to BC Children’s Hospital or the Miracle Network, or Balding for Dollars or any of the Wish Foundations, the same way that I used to. It’s real! It’s personal.

They have given so much to us, to our family…….to Angelica!

If you have the opportunity, please give. There is a Balding for Dollars Event coming up at BC CHildren’s Hospital on May 7th, and if you are interested, you can go to their website and give….

This is not just some nebulous foundation that does some random nice things one in a while. We have personally benefited from the Balding for Dollars Foundation and want to be able to see them, help others.

Angelica contributed to the Kourageous Kids Calendar and although it’s already partially through the year, you can still purchase a calendar and have a piece of Geli’s Artwork.

We imagine all the people who have given to allow Geli to have a wish and we are so thankful for each and everyone…….

Part 1 – The Place I’m In

I have written, discarded and re-written about 6 different posts and I have no idea how to write about what I’m thinking about or where to even start.

Okay, lets try this out…

The chemotherapy that Angelica is going through kills cells. It specifically kills cancer cells, but indiscriminately, it kills a lot of other cells.

Our White cells are the infection fighting cells and more than a few times throughout these last 10 months, Angelica’s white cell count has been almost completely decimated. I compared the White Blood Cells, one time before, to an army. Imagine different units within that army. Unit #1 does the actual fighting of the different diseases and infections and viruses; while Unit #2 does all the recon work and Unit #3 has all the previous battle plans and strategies stored and ready for the next time they come up against a particular adversary. Obviously, this is an oversimplification, but you get the idea???

Playing Frisbee with Josiah

This particular virus that Angelica just had was a common virus that 75% of children under 3 years old have already been exposed to and had and 90-100% of children under 5 have already been exposed to and had…….

This means that Angelica, at 14 years old, was just dealing with a virus that she’s already dealt with previously. Those particular White Blood Cells that would have remembered and quickly destroyed the virus, were destroyed in a prior “Chemo” Attack and so she got sick. The only other one of our kids that got sick with this particular virus is Judah……so there is a good chance that Xani, Jeremy and even Josiah who is 3 years old, have already had this particular virus, especially seeing as it is, apparently, quite a contagious virus.

The threat of Angelica picking up different bacterial or viral infections is less than if she were a toddler or a young elementary school age child. Geli is not crawling on the floor or rolling around on the floor or picking up random bits and pieces off the floor and putting them in her mouth. She does not put a lot of objects that have been laying around into her mouth, and she is of the age where she can practice good hand washing techniques which drastically cut down on the amount of “bugs” that she might pick up. She can recognize and avoid, openly sick people and all of those different measures contribute to her being able to do things like going to school or to a movie. There is still a risk of her coming in contact with a certain virus or bacteria in going out in public, but she is not at as much risk as if she were younger.

But, we do have 2 little ones in our house, and they are the perfect age and quite susceptible to pick up on all the routine viruses that most all children get. Under normal circumstances, we wouldn’t give it a second thought and they would pick up and deal with all of these different viruses and bacteria and build up their own sweet immune system and because we older ones have already dealt with a bunch of them, we’d have two cranky little ones, but we’d be able to deal with it without too much trouble.

Run, Siah! Run!

Seeing as Geli’s immune system has been compromised AND any fevers mean a hospital stay until they figure out what is going on………we try our hardest to not place the little boys in a position where they might pick something up and bring it into our home to “share” with Angelica or anyone else for that matter.

This means no church, no play groups, no daycare or library time. There are no extra-curricular activities like swimming or gymnastics and we try to avoid the store during the busy times and often leave the boys at home, if it’s possible.

This has made for a very long and lonely year for me. I spend the majority of my time, in my house. We spend a large portion of time trying to create a safe place in our house. It’s not the easiest thing and I find that I feel like I’ve stepped out of the “world” and my life has stopped while the rest of your lives have carried on.

It’s a bizarre place to be in….

(to be continued….)

Magical Creatures…

I am just trying to survive.

I am on day 3 with a cranky, not feeling 100% baby who wants to be held ALL. THE. TIME! And, that would be almost okay if he would nap, but so far today we’ve done 2 naps for a combined total of 19 minutes. YAH! Cranky, OVERTIRED, Not Feeling Well Baby, for the win!

The house is um…..sort of somewhat tidyish, ya now minus the rice crisps that the baby was eating off the floor that he managed to smoosh into 5 million tiny shards. I still need to sweep those up, and I really should be folding the 4 loads of laundry and washing Geli’s bedding before she comes home tonight and all of that is kinda difficult to do with a cranky baby hanging off your hip. Did I mention that the baby weighs 30 pounds? Yah, cause doing anything while carrying around 30 pounds is not the easiest thing in the world.

I finally packed the boys up and put the baby in the stroller and we walked around our complex a few times and out and around the cul-de-sac just to get a bit for fresh air. Honestly, I had hoped that maybe this tired baby would crash, but no luck so far.

BUT…..he is playing on the floor in front of me, while I sit on the couch typing up this post, so that’s positive right.

I did manage to get a roast into the crock pot this morning and so at the very least dinner is taken care of.

Did ya catch that reference up there a few paragraphs back? Jon and Geli are coming home tonight.

As of 7pm tonight, the 48 hour time line for her blood to culture any bacteria is up and she gets to come home. It’s pretty much determined that it was just a virus and they don’t want her there any more than we do, and so we’ve asked to come home as soon as the 48 hr wait is up.

Her white count is actually coming up and her neutrophils were above .5 this morning and that’s a good thing. Bad thing was that even though she received red blood yesterday it only raised her levels by 15 points and that’s not enough to help her feel better. She was at a 71 yesterday for her hemoglobin and while some kids can tolerate being down as low as 60 or 50 something, Geli starts to feel pretty rough at 80 something….. She feels short of breath, and has headaches, and feels like her heart is pounding and is major dizzy and light headed. The chemo that she is getting hits it high point of effectiveness (the nadir) tomorrow and so some of her counts are still coming down. So the 85 that she hit as of this morning will probably end up back in the 70’s or lower as of tomorrow and so in order to deal with that, Geli is getting another “strawberry shake” today. Her platelets were also at a 20 and while that’s not the end of the world, we don’t want to have to be on pins and needles around her in case of cuts or bruises and so she is also getting platelets today. But after she gets filled full of red blood and platelets, she is good to come home! Hooray!

I spent a quiet day at home with my boys. We sat outside for a while and it was so nice to just be outside in the sun. I love the sun. It makes me feel so happy. I’m so ready for spring and summer to be here. I love the snow in the winter, but the rain…..well, I’ve had enough rain this year.

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.

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.

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.

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.

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