Category: Jon

Exhaustion….

is having your 3 year old son come to bed at 1am only one short hour after you’ve gone to sleep and having him awake and thrashing around in bed when at 2am you hear your daughter barfing. Then to have your husband fully wake you with the knowledge that your daughter has a fever of 38.1F.

Any fever is treated as serious and severe and warrants an immediate trip to the ER at Children’s Hospital.

The magic number that earns you an immediate trip to the hospital is 38.5F and so we called in to the oncologist on call to see what they’d like us to do…seeing as she wasn’t far off. Just so you know, her normal temp hovers between 36.4 and 36.9. We have to take her temperature daily in the morning and in the evening because when your counts are low, you don’t typically present with normal symptoms of infection…you just get a fever!

So when we talked with the oncologist on call, they said to wait half an hour and take her temp again to see where it was going….At this point I was up and Jon was up, Geli was up and Siah was up….Geli was finishing packing her bag as we were certain that she was heading in for a 2+ week stint of an antibiotics run. When there is a bacterial infection that runs rampant, she gets put on general IV antibiotics for a few days while they culture for the exact strain of bacteria and once they figure that out, they give her the correct antibiotics and then they take her blood every day looking for a test to come back negative for the bacteria. Once they get the negative test, then it’s two weeks on the antibiotics and then she can come home……lovely, eh?

This is what we were preparing ourselves for at 2am on a Wednesday morning. Jon was getting a last minute snuggle in with Siah. Geli had a bag packed and was laying on the couch and I was frantically cleaning the kitchen…..all the while trying to figure out how I was going to “do” everything especially when there was no way that Siah was going to sleep anytime soon, and honestly neither was I. Although I could go and lay down, I seriously doubted that I’d be able to sleep until I heard an update from Jon.

Finally, the half hour was up and her temp had gone from 38.1 to a 38.4 and so Jon rang to let them know they were on their way and that the temp was creeping up and they headed in.

I brought Siah back upstairs to my room and put on a movie for him on my laptop. He watched Enchanted, while I lay there waiting for an update. In the early morning hours time seems to stand still, but Jon finally messaged me and really had no update other than they were there.

He kept messaging me with what little information that he had and the end result was that things looked kind sketchy because she had a fever while already being on antibiotics and who knows what that meant and yet her counts weren’t indicating a bacterial infection and they weren’t admitting her, but they wanted her to say until the Oncology Clinic could assess her and it didn’t open until 8am so they were gonna try to rest and hang around until then. Siah’s movie finished after 5am sometime and I convinced him to fall sleep.

I finally fell lightly asleep around 6ish and then Judah woke at 7:30am to eat. Siah woke up for good just after 8am and I’d not heard anything regarding Geli yet.

Jon finally messaged me that they were giving her a IV dose of a big antibiotic and sending her home thinking she was dealing with something viral and that she could recover just as well at home as at the hospital…. She does have to come in tomorrow morning for some follow up blood work and another dose of antibiotics.

It was nice to have them come home. We have no idea where she could have picked this virus up, but this does speak to her compromised immune system. We feel fine, but somewhere, somehow she’s picked up something. Fortunately, her counts are just on the high-ish side of low, enough so, that she can be at home. Were her counts lower, that would not be an option.

But, this is one of the reasons why we must be so careful right now….Her system is just so fragile.

She’s been sleeping on the couch since 10:30-ish about half an hour after they got home. Jon took Siah upstairs and convinced him to fall asleep with much wailing and tears, but in spite of his exhaustion….Jon couldn’t sleep. Sucks!

I’m surprised that it’s already 2pm….I’m hoping that the rest of the day flies by until the moment I can crawl into my bed and that there are no more hiccups and especially that Geli starts to feel better so SO soon!

High Tide and Low Tide

It’s been almost a week since my last post and we’re still trucking along.

The chaos hasn’t really settled down as much as it’s just shifted or changed direction.

Geli has completed the first two weeks (out of 8 weeks) in this second stage of treatment. She was in the hospital yesterday for another lumbar puncture (with accompanying chemo into the spinal fluid) and then received one chemo drug through her IV and another chemo drug that gets given by two shots, one into each thigh.

She walks away from the day with a sore back, a headache, two thighs that feel like they’ve been kicked by steel toed boots, an upset tummy and some serious fatigue. She woke up this morning feeling really off and has spent the day on the couch or hunched over a bright shiny silver bowl. I’ve given her a substantial dose of Codeine and she is sleeping right now.

She’s doing well considering what she’s dealing with, but it’s not all sunshine and lollipops over here.

I had a really bad day on Sunday. It started out okay and somewhere along the line I ended up feeling completely overwhelmed by everything and then spent the rest of the afternoon/evening crying. If all of “this”, the emotions swirling around everything comes in waves, then Sunday was definitely a low tide day for me. I managed to wake up on Monday morning and things were a bit better, but when the evening rolled around and I needed to decide if I were going to my exercise class or not……I forced myself to go as I need to go for emotional and mental reasons as much as I need to go for physical reasons.

I find that if I can go and work so hard that I can’t really think or focus or concentrate on anything else…..it gives me a break from everything and then I feel so much more able to jump back into the thick of everything and deal with it all from a position of strength…..and so I went. And….surprise, surprise! I felt a lot better when I was finished.

We have a quiet week ahead of us.

This second stage of Chemo is a total of 8 weeks. There are 2 weeks of intensive everyday treatments, and that’s followed by 2 weeks where she’s only scheduled to be in at the hospital for 1 day per week. This week is the first of those 2 weeks. Then we do two more intensive every day weeks and then 2 more weeks of 1 day per week.

Here are the most current prayer needs and praise reports.

Angelica has done amazingly well as far as side effects go and we are so thankful for your prayers. Some of the most common side effects from the drugs she’s currently on are mouth sores, nausea and vomiting, fever and low blood counts. Geli has had very little nausea and has only had one real episode of vomiting. She’s had no mouth sores, or fever, no real other side effects and although her blood counts are low – they are not as low as they could be.

These are amazing things because she could be feeling SO. MUCH. WORSE. than she currently is.

We would love prayer that she would stay physically and emotionally strong, and that her tummy would stop hurting. She says that she doesn’t feel sick and nauseous most of the time, but her tummy hurts or aches and it would be nice if that would go away. Also, we would love prayer that she would recover quickly from her big day yesterday and that the headache that is bothering her would go away.

Jon and I could use prayer that we would stay emotionally and physically healthy and strong. It is tough to deal with everything that is on our plates right now. Also that we would have time and opportunity for each other in the middle of all this craziness. It’s difficult to find the time, and resources to be able to invest in each other at times like this and yet even if everything lines up well….often we are so exhausted that it feels like too much effort to go anywhere and do anything.

Xani is struggling with all the emotions that she is feeling. She tends to feel extremes when it comes to emotions and has been swinging between stuffing her emotions and exploding with her emotions…..both extremely unhealthy ways of dealing with her emotions and so we are trying to walk her through sharing her emotions in a healthy way and at the same time dealing with the fall-out of the stuffing/exploding cycles.

Jeremy is Jeremy! He has so many thoughts and ideas racing through his head and often it is exhausting trying to keep up with him. Alternately, he is frustrated with us that we don’t seem to get or understand or that we just don’t have the time and energy to put ALL of his ideas into practice. It feels like we are in a constant tug of war with him mentally and verbally. It’s hard for him and us.

Josiah….well, lets just say that Josiah turned 3 on August 4th and I still haven’t written odes of love and adoration to him as I reflect back on the last three years of his life. That may or may not have something to do with the fact that currently……on any given day……I’m about ready to strangle the little bugger. He is my love, my darling, my miracle baby and yet…..

The whining, yelling, screaming, constant arguing, climbing, getting into things…..well, it can all be summed up by saying that he is testing his boundaries in a BIG WAY. Normally, this would be okay and we’d just set the boundaries and enforce them repeatedly until he figured out what was acceptable and what was unacceptable…..with everything else going on and the exhaustion that is a result of everything else going on…….lets just say that our consistency is not as it should be. I honestly think that he senses that things are not “right” that they are not as peaceful, calm and consistent as they have been and the chaos is affecting him negatively much in the same way that it’s affecting everyone else.

We will all get through this, and we keep telling ourselves that its just a season, but if you are wanting to pray….this is what we need prayer for right now…

To everyone who is praying…… We appreciate every single prayer.

Summertime Fun

This summer has been unusual, abnormal or atypical, to say the least!

We are trying to keep things as normal moving along in a fun and relaxed way while at the same time taking the necessary precautions to keep things as safe and healthy as possible.

Knowing that we are heading into a period of time where Geli’s infection fighting ability is at a low (to non-existent) point, I was trying to figure out something fun that we could do to celebrate the long weekend. We need to be away from gatherings and crowds, and so that make everything a little more difficult and limits some of our regular “go to” family activities.

I figured that we could have a picnic. The kids ALWAYS want to pack a picnic, a blanket and some games and spend an afternoon together, and unknown to the children – that is what we planned.

When we woke up that morning, the weather looked yucky and worse, IT WAS FREEZING!

And so my brain went into overdrive to try to figure out how we could still do something fun, but indoors…..

We have a large shag rug that I figured would be perfect for a little indoor mini Bocce Ball Game. We had a small whiffle ball for the target and 3 pairs of hard rubber bouncy balls in blue, yellow and orange. Then I was going to set up bowling with a bunch of empty water bottles, and a tennis ball. Our hallway is the perfect spot for that. Then I figured that we could pack our lunch basket and put a blanket on the living room floor and I was even thinking of different ways to make smores either in the oven or over the bar-b-que.

I figured that even if the weather didn’t co-operate that we could still have a great and fun adventure of a day.

Fortunately……by lunch time, it was warm and the sun was trying desperately to peer through the hazy clouds. So, we packed everything up, told the kids that we were headed to Derby Reach, got in the van and headed off.

We got there and headed out onto the grassy field to lay our blankets down, and sat down and ate.

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We get KFC about once a year and that’s enough to remind us that it’s SO DISGUSTING and then it takes us about a year to forget just how gross it really is and then we order it again….

Nana and Papa came down to join us and then it felt like a party and not just a picnic…

Jon sat and held Judah in the shade….

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And Judah was fine for a while but very quickly decided that he didn’t really want to just sit and he informed us of that quite loudly….

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Geli, Xani, Nana and myself decided to play a rousing game of rummy…

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Jeremy told Papa all about his creations and inventions and tried to talk Papa into building an electric chair on a track that would go from the top of our house all the way down to the basement for Judah to ride on so that it would be easy for him to get around…..

Papa seemed quite amused by Jeremy’s ideas……

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but then HONESTLY…who isn’t amused by Jer’s ideas…my sweet, SWEET boy!

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Judah finally chilled out when we laid him down on the blanket….I think he liked looking up at the giant tree that we were sitting under.

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We played about 10 rounds of rummy, but Xani got bored and dropped out of the game…..

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Nana had a good attitude throughout the whole game even though, I whooped her’s and Geli’s butts…..

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Isn’t she pretty?

We found this little guy crawling on our blanket…..cute little pink lady bug!

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Papa took Jeremy and Xani for an adventure walk through the trails and Jon took Siah down to throw rocks into the water. Siah managed to get soaking wet, and then in true Siah like fashion…..he came back to where we were sitting and a HUGE mole hill sucked him directly into it’s core…

He just threw himself face first directly into a pile of dirt!

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I could complain, but it kept him entertained…..

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and captivated…..

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for ever…..

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I think that this was the best part of the whole outing as far as he was concerned. And then……oh, AND THEN..

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Then he decided that he was not quite dirty enough…

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Oh baby! I think he just wanted another dunk in the river….which we gladly obliged and then we packed up and went home……The End!

Actually, it was the end of that particular adventure but little did we know that it wasn’t the end of the day….there was another exciting adventure waiting for us, but I’ll save that for another post……..

It was a great day and we have some great memories of a fun and special day.

Edited to say: You can click here to see the whole set from our Derby Reach Adventure

One too many things to juggle

I was talking with Patti the other day about the ‘costs’ of dealing with a child with cancer. The medical protocol is a well tuned machine at this point, but the schedule for visits, drug administration, tests, etc. has the hours of a full time job. We can see how a family could loose everything, or have to sell a house, or something to get through this, because you can’t go back to “normal”.

In our situation, there are some things that we are finding hard to balance. 1) we have a daughter who is fighting cancer (and winning). 2) we have a new-born son who requires a lot of holding and feeding and usual new-born stuff. 3) we have a 2 year old that is very busy and wants to touch and climb and jump and run and search for gum, not to mention spitting, throwing food, peeing his pants, dumping makeup on the floor, and he also has an egg and dairy allergy that keeps us on our toes. 4) we have work to fit in there somewhere. 5) oh yea, there are two other kids, one that has AD/HD, and one that has well developed adult emotions.

Patti is a very organized and capable person… she could do any combination of 1+2, 1+3, or 2+3, but 1+2+3 is too much. I could do the work thing, or carry the load of the one that patti cant carry, but both is really hard. We are trying to find balance and we have very understanding work situations and supportive family and it is still almost more than we can carry.

Today serves to show what I mean. I have a daughter that needs new glasses and needs a visit to the optometrist that we really trust in abbotsford, but he only works a few days a month here and we booked a visit… but had to move the visit because of a conflict with an appointment for Angelica. I’m not usually the one that would organize this stuff, but we are all giving-and-taking. the appointment got moved to Thursday and i made sure to take the last appointment slot at 6:00 so I could make it and I JUST made it after driving ALL day.

The receptionist looks at me blankly and says “I don’t have your kids booked today”. ???

It seems that NEXT Thursday they are booked and that detail was overlooked in the conversation between Angelica’s doctors and me taking the call from the optometrist’s office and trying to remember all the details for everything until I could write it down…

I sigh and realize that I will have to do this trip again next week and that… I have one too many things to juggle.

Jon

What is and what will be

When we first sat down with our doctors and nurses and coordinators and the social worker all assigned to us at the first diagnosis, they talked in detail about what we were about to face.  They talked a lot about the first phase of treatment and that there were four (or more) phases. To be completely honest, I kind of blanked out when they finished off the first phase.  It was all I could do to focus on the next hurdle; the next goal. As we made it through that phase, it was very much like they prepared us for (except they said most kids experience at least one side-effect; they didn’t say we get to try them all).

Thank you for praying:
We made it through the first stage (Induction), and met all the bench marks.  Angelica has stopped the steroid that was causing the diabetes, and has also stopped having diabetes, she finished induction with 0.0% leukemia cells in her marrow, and her blood counts have come up enough to start phase 2, and most importantly her numbers are up enough that she can tackle a few public outings.

2 Days of Summer:
With Gelica spending most of the first month in the hospital and starting phase 2 (Consolidation) on Monday, she effectively gets to enjoy summer for 2 days. We’ve gone to a movie that we were supposed to do for Alexandra’s birthday with her friends (which still hasn’t happened) and today we are going to a pool and having a BBQ.  When Angelica was at her weakest, I told her that she would be feeling better and that there would still be some summer left to enjoy, and she replied that if she could go do Rick and Linda’s pool just once, then it would be ok.  It’s now or never (probably).

Consolidation:
Where induction is aimed specifically at the marrow, consolidation is aimed at eliminating leukemia cells throughout the whole body. Leukemia cells can hide in the body at levels that are currently undetectable. So it is a treatment based on theory and years of statistics. There are no actual benchmarks to aim for, as there is nothing big enough to test for, but nonetheless, it is an intense therapy.

Consolidation consists of several drugs, most of which are various forms of chemotherapy.  It will bring her marrow and her blood counts down again, which is why Angelica needs to have reasonably good counts to start with (they are not up to normal, but are just considered low as opposed to very low).  The main side effects to look for are mouth sores; diabetes is not a side-effect of these drugs. The biggest issue we will face is the practicality of driving in and out of the hospital with this treatment.  There are a lot of visits scheduled, most are in the middle of the day and there are four other kids (one of which is a new-born) and work and such that have to be worked in and around.

We have to go into the hospital for a full day, then three hour-long visits over four days for two weeks, then two weeks off, then two weeks on, then two weeks off…  This phase is scheduled on a calendar over 57 days, bringing us to September 20th.  Angelica will likely not get to school at all in September, and this is her first year of high-school, so she’s a bit disappointed about that.  She will likely have blood counts that are low enough through this time to keep her and our family for the most part in isolation.  This is not a fun road.

Please pray:
We need prayer for the treatments to go well, and for Gelica to not get any sores. We need to really pray again that she doesn’t get any infections during the course of treatment so she doesn’t have to stay in the hospital. Pray for peace and good communication in our home. Pray for schedules to coordinate and for there to be enough hours in the day to get everything done that needs to get done.

Thanks, Jon.

PS: A special thanks to the Tulloch family. Even though I haven’t gotten to meet you yet, knowing that we are in some way connected to a family that has gone through this not that long ago, and successfully is a great encouragement.

One of these things is not like the others

“One of these things is not like the others” was my favorite Sesame Street song.  You have a choice of three or four things, and one of them doesn’t fit the pattern for some reason. Well some people following our family have noticed that everyone is bald, except dad (that would be me).  (And Jeremy is excluded from this if he wants to be).

I just wanted to set a few people at ease as to why I still sport my nice long locks. We have shaved quite a few heads over here, and there are quite a few more pictures to show of people who have joined in, and one tear-jerking email that we will post from one of the shaved that explains why they are doing it. During all the festivities, Gelica informed me that she didn’t want me to shave my head.

I like my hair, but its not the most important thing in the world to me, and it doesn’t even compare to the importance of Angelica. I sat down later and talked to Angelica about what her thoughts were and what all this means to her. The different people that are cutting their hair means a lot to her. She is learning about how people care for each other, how people “join” in standing with her, and a host of other valuable life lessons, but she is starting to realize that EVERYTHING is changing.

That’s an interesting thought, because in a lot of ways for her, everything has changed. There are many things in her life that will never be the same. There are days when all the change is too much… not many days, but some, and right now, she doesn’t want me to change.

Spending this past month or so with her so close, through so many trying things has brought us closer together than I ever could have expected. I am really really really in love with my daughter and am really enjoying all of the wonderful things that make her soooo strong and able to face this. We have our own inside jokes, learned each others opinions, and many more things that will last a life-time.

If she wants one thing to remain “constant” and she sees that in my appearance, then I am all for that. But in the spring when everyone else’s hair is growing out and things are returning to a new normal, there is a fund-raiser called “balding for dollars” and I’ll probably be there. I have been assured that I would raise a lot of money being a guy with long hair. I also realize that we have benefited from so many programs and special funds that if I can give back then, then I will.

Jon

How many oncologists does it take…

First off, I’ve been dreading the Wednesday meeting.  We are supposed to go in and meet with the oncologist in charge of our case and discuss the results of the last marrow biopsy and spinal fluid biopsy.  Results of greater than 0.1% leukemia cells would get us another two weeks of induction and 0.1% or less would take us to phase 2 of the treatment.  I have been a pillar of faith through most of this, knowing and believing in the outcome even if Angelica and I (and the rest of our family) have to walk it out, but we’ve had so many unexpected bad experiences so far that I kind of knew what the results were going to be… we were for sure gonna have two more weeks of induction.

Enter Monday Morning… Patti comes down the stairs as I am thinking about making coffee and says, Angelica has an infected toe.  It was an ingrown toenail that had developed some redness and puss.  A quick phone call to confirm… they want to see her at the clinic at Children’s.  No fever, No other symptoms, but we head off to Children’s without coffee… and this all seems so ridiculous because we have to come in on Wednesday anyway for our meeting.

With a suppressed immune system, any infection can spread unchecked and any infection could be fatal, so even a toenail gets thoroughly checked out.  At one point the three most senior oncologists that were in the clinic that day were all in our exam room looking at her toe… at which point I wanted to start a round of jokes with: “How many oncologists does it take to treat an ingrown toenail?”

They decided to double check her blood counts and prescribed some antibiotic pills that she can take at home and as soon as we got the results back from the blood and the script got filled, we could go home.  This was amazing to hear, because I was sure they were going to tell me that she needed to stay for a couple days.

While we were waiting for the script to get filled, our ‘coordinating nurse’ came in all excited and said “Has Tim come and seen you yet, the marrow results are in?” (Tim is our senior onc)  We were not expecting that they would be in till at least Tuesday.  I said no and she informed me with great delight that Geli was MRD negative and then left the room.  While I was happy that she was happy, it took me a second on my blackberry to google the possible definitions of “MRD“.  It stands for Minimal Residual Disease.  So to be MRD Negative means that there is not even a minimal amount of the leukemia cells in her marrow.  It means that she is at 0.00% leukemia cells in her marrow.

A little aside here… There are at least four stages of leukemia treatment in youths.  The first stage is getting to MRD negative or at least a low number MRD.  Kind of like a baseball inning that does not end till the third out, they keep treating until the desired result is met.  This means that we can go on to stage 2 and greatly increases her odds of never having a relapse. The other thing to note is that leukemia is mainly active in the marrow of the bones, but it can “hide” in lymph nodes, liver and a host of other places.  The next stages are designed to “flush” it out and get rid of it in everywhere it is known to hide.  So there are various drugs, and various chemo treatments that are administered in a specific order.

This news was a bit of a blessing, because it took what I was preparing to be a negative meeting and completely derailed it.  Now we know what to expect, there is nothing to “brace” ourselves for, there is no Wednesday meeting to decide… it is all laid out and planned.  At this stage of the process and our family and our lives, having some variables removed is WONDERFUL.  There is chemo and there are side-effects that come with the various stages, but at least we know when they are coming and what to do to prepare for them.  This road doesn’t become easier, just a lot more planned out.

We asked for prayer for the Wednesday meeting, for good results, for God’s hand and His peace on us.  God has been on today, right from the beginning of getting us in there with a toenail. (and we did come home and she is feeling better) Thanks to everyone for the prayers and support.

Jon

Unexpected Surprise

On Tuesday, Gelica’s counts were too low.  She had a fissure and there was only a slim chance that she would come home, even this weekend.  Yesterday morning, the oncology doctors came in for their usual daily visit and reported that the nurses were not showing any signs of the fissure in her “specimens”, and that her counts were coming up nicely.  There was a short discussion between various specialists, and they came back in the room to inform us that…

There was no reason for us to stay any longer.  There was a procedure for this morning, but we could do that as an out-patient. So…

Gelica packed up the room basically by herself as I talked to a few specialists and doctors to make sure we had everything for going home.  We got our discharge orders, took three trips to the car to load everything in, and then CAME HOME!!!!

We had dinner as a family and hung out as a family. I played with the boys and sung them to sleep. I tucked two sisters into bed and prayed for them.  Patti sat and nursed Judah while I did one load of dishes.  It was the most normal of household activities and it was wonderful.  Patti and I slept in the same bed for the first time in a month.

Gelica and I did have to go back to Children’s today through rush hour traffic and it was worth it.  We had to go through the outpatient routine for the first time, and it was still worth it.  Doing this together as a family is WAY WAY WAY WAY WAY WAY WAY better.  Thank you to everyone that has been praying that the numbers would go in the right direction, and that the fissure would go away.  That is exactly what happened and a couple days ahead of what we were told, and this is the first time that something has happened ahead of schedule.

Thank you God!!!

Jon

Hospital Time

We’ve learned through several encounters with the medical system that projected dates and times are not to be taken all that seriously. It’s not that there is anything wrong with the medical system, it’s just that each person’s reaction to medication, treatment, environment, etc is all different. Add to that the unpredictable nature of how many emergency cases come in during a day that supersede something that you were expecting and we have what we know as “Hospital time”. (for instance, being taken off of your IV line at 2:00pm, might mean 1:30 or 5:00pm and you just have to work around that.)

We understand all the things that go into making the reality the way that it is, but on the 16th of June, we started a journey that has turned our family upside down, and then on the 24th of June, we added to that family a new precious little boy. Both of these events in and of themselves requires a certain amount of readjusting, but put them together and then throw in “Hospital Time”… “Expect to be here 7 days… Make that 10 days”… “we’ll keep you one more night to observe”… “you got a fever, you’re going to have to stay 3 more days so we can check it”… “Its an infection and you will have to be here for a total of 10 to 14 days”… “we have to keep you the full 14 days and your counting is 1 day ahead”… and that brings us to today. (Oh and throw in a 15th wedding anniversary, xandra’s birthday, and fathers day that never really got celebrated)

In 24 days we have not been together through things that we would normally really lean on each other for. Patti and I are a great team and we have learned to be the right kind of support to each other, and we have been forced to do this separated for the whole ordeal so far. If they had told us at the beginning that we might be here for a month, that would have been hard to hear, but we would have been able to plan around that. This process has really been taxing on us.

PLEASE PRAY:
Gelica finishes her 14 days of antibiotics tomorrow am, and if everything else was ok, should could come home. BUT… It seems that she has developed an fissure in her colon (an expected complication of intense chemotherapy), and it could get infected. Also her white blood cell count is microscopically low.

Please pray that the small fissure will be completely healed and that her white blood cell count will rise. If they don’t then we wait day-to-day until she can come.

Pray that Patti and I and our family would be all brought together right now. We really really really miss being together and it is very emotionally challenging.

Thanks for being such a wonderful community and for all of your support, meals, kind comments… thanks to the ladies that came and disinfected almost every surface of our house. Most of all, we know that we are not alone.

Jon

Happy Birthday Alexandra

In the middle of all this other chaos, it is very important to me that this very important day doesn’t get forgotten about.

It is with great pleasure and many gushing happy feelings, that I wish my sweet Alexandra Janelle Culley a happy 12th birthday.

Alexandra Culley

My Sweet Xani
Happy 12th Birthday

Alexandra is having to miss out on a family birthday dinner and having me there to hug her today, so feel free to leave birthday wishes with her here so that she can “fell the love”.

Jon

Edited to include Xani’s comment:

Well apparently I’ll be celebrating most of the summer. One tonight with Geli, Tomorrow with Amy, one with school friends, and some time with Nana Culley. But thanks for all the happy B-days.

love Xan