Category: Health

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

The Waves Roll In

Today is the day after the Bone Marrow Biopsy and the Lumbar Puncture and today is a bit of a rough day emotionally for Angelica.

She’s mostly held it together for the past 28 days, but today the waves of emotion have crashed over top of her and she is finding today difficult. Lots of tears, lots of feeling, lots of emotion…..just too much of everything!

On top of the emotional side of things, she is in quite a bit of pain from the Bone Marrow Biopsy, AND….she managed to tweak her back in the car on the way home yesteday.

Today is a bit of a rough day and that’s putting it lightly.

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

Trying to Hold It Together

We had one of the Residents who has been assigned to Geli’s case come in and talk to us this morning.

It seems that her blood counts are currently too low to allow for her to go home, but there is the possibility that they could raise enough by the weekend……BUT……she then announced that the Infectious Disease People like to see 2 weeks of negative counts before they will release a patient and in Gel’s case I guess they were testing for 2 different things and on the 27th had one neg and one pos and on the 29th both were negative for any infection…this would push our release date from Sunday to Tuesday.

I’m not gonna lie….I’ve been fighting tears ever since they said that. I don’t want to cry and upset or bother Geli as she’s not really said anything yet, but I just want to go home so badly. I’m so upset. I was concerned about this and now feel a bit like, “what’s gonna change as of Tuesday and keep us in here for another few days”….its so stupid.

I’m struggling today.

Really, Really struggling!

Updates…..

So we talked with Angelica’s Dr yesterday afternoon and he shared with us the reports from Geli’s bone marrow biopsy on Friday.

DSC_0396

Apparently, her bone marrow initially was up closer to 97% leukemia cells and has now dropped to 17%. There are some cases where they see the leukemia cells gone within two weeks, but Geli hasn’t responded quite as quickly as that. They are hoping that by day 28 that there will be no more leukemia cells…..

This is our next big prayer request….that Geli’s body would be completely rid of the leukemia cells when they do the next bone marrow biopsy on Friday July 16th.

Because they know that there were still 17% of the cells still there…..they are not going to do a biopsy this Friday but will wait until the last treatment day of this 28 day Induction period.

We have also found out what’s happening regarding the infection that managed to foil our plans for a swift get away from the hospital….

There is no more infection that they can find in Geli’s body BUT……..because they have started a 14 day regimen of antibiotics…they must finish the treatment. So, at this point we are scheduled to leave this upcoming Sunday afternoon……

We are in the countdown….YEEEEEHHHHAAAAWWW!

Angelica is doing well, and aside from the antibiotics – there is no reason for her to stay here. This is GREAT news, but at the same time sucks because we are stuck here until Sunday, and home just sounds so so SO nice.

Its wonderful to see that as the leukemia cells are being killed off, that her body is trying desperately hard to build itself back up. Her blood counts are all still quite low, but her body is trying so hard to rebuild and restore. We are designed and created so amazingly.

Another thing to be praying for…..that Geli doesn’t pick any other bug up from the hospital and that we stay on track to be able to come home on Sunday.

DSC_0399

Big Thanks for the package from New Zealand

Thanks again for all your support, love and prayers.

We are in awe of you all!

Like Ships Passing in the Night….

Jon went home today to spend a little time with the kids and like ships passing in the night……Judah and I took over at the hospital.

It’s nice to see Geli, and nice to be able to sit (see previous post where I birthed an almost 10lb baby) and not be stressing about the 3 highly active kids at home…..or on the flip side to be stressing about my family taking care of my 3 highly active kids. But, I really REALLY miss Jon. I can’t wait to be able to see him and spend some time with him….talking, loving, just being….but it my be a little bit longer before that really happens. And…..such is life!

I ran into someone on Saturday at Superstore and shared a bit about our story. I got to the part where I mentioned that my eldest daughter was just diagnosed with Leukemia….and to be honest, there is a part of saying that, that just seems so dream like….its like I’m watching or hearing someone else talking about their life….There is this feeling that this can’t possibly be MY life…..my daughter’s life…..my family’s life…..that I’m talking about. It still seems a bit surreal.

And yet, it’s WAY TOO REAL….

We’ve shared some pictures, and talked about some of the better times, and about how Geli is doing so well (and she really is) about how we have peace knowing that this will work out, and about how we feel really very positive about this whole situation, and yet there is this other side to this whole situation…..No one really wants to talk about the negative stuff, but I am going to mention it so that if you pray…you know how to pray….

There are times, when Angelica is sick…..That’s hard. The chemo meds make her feel quite nauseous and when you are feeling that sick…..then nothing feels good. It’s the worst right after she receives the chemo….She gets the chemo on Fridays and then feels crappy right through to Sunday or Monday. It makes life very, very miserable.

The bone marrow biopsy hurts….and even though Geli is given meds to sedate her, it ends up feeling like she’s got a giant bruise on the back of her hip. This makes laying or sitting in bed hurt or ache a bit. Again, not fun!

There is a spot of irritation on the back of her throat, and while we are so thankful that Geli doesn’t appear to have massive sores from her mouth down through her digestive system, this little irritation (that they are keeping a close eye on) bugs her just enough that she wants to clear her throat and/or eat something to distract from the tickle feeling. it also makes her feel like she wants to gag….and that sucks!

Her left leg has a cramp behind the knee that extends up into the back of her thigh and they can’t seem to figure out why it’s doing this. It seems to have a numb spot in it and they’ve ruled out that it might be neurological….but don’t have any concrete reason as to why it’s done this….and so she is on crutches because they don’t want her torquing her body like she was, trying to compensate for her leg.

One of her chemo meds is a steriod and it is wreaking havoc with her sugar levels and they have been CRAZY high. Basically, the steriod has put her in a diabetic state. She doesn’t have diabetes, but her body is not able to produce enough insulin to compensate for what the steriod is messing with and so she is on Insulin and has to inject herself 4 times a day. We seem to have finally been able to get the levels under control….just barely. Today was the first day that 3 out of 4 readings were within the acceptable range…..just barely within acceptable, but still within….up unti today they’ve all been almost double what they should have been.

Also, we should be getting the report from the bone marrow biopsy that they did on Friday…..the previous two biopsy’s showed that 86% of her bone marrow was filled with leukemia cells and with the second biopsy it had dropped to 57%. We are praying for an even better report to come tomorrow…..

And, we are also requesting prayer that Angelica and everyone in our family….both immediate and extended would be and remain healthy.

We’d also love that the infection that Geli had to be completely wiped out of her body asap so that we can all go home together……that would be such a HUGE blessing……

She’s been in the hospital now for 19 days….and although the staff here at Children’s Hospital is amazing and we can’t complain about our stay….it would be so nice to have our family reunited once again and all under one roof.

I’d also like to take a quick moment to say thank you to everyone who has co-ordinated with my sister Michelle regarding meals for our family. The meals have been amazing. There hasn’t been one yet that wasn’t delicious and such a huge HUGE blessing. I’m so thankful to all stepped in and helped us out in this way. It’s so amazing to me to know that my kids and family are able to eat well and that I don’t have to be stressing about them eating out or eating unhealthily.

Thank you to every single one who has brought a meal……I am so grateful. I feel so very loved, and supported and blessed. It means a lot to me that you all would work within our dietary needs and requests and still help us out.

Thank You!

Judah…..with Pictures!!!

Alright, so there is no way that under “normal” circumstances that I’d have ever gone this long without posting a ton of pics of our newest, sweet, little man, but these are far from “normal” circumstances.

We have TONS of things to share about Geli, about Judah, about our family, about many other things; but…….it all requires energy and time….and those are two things that we seem to be running short on these days.

DSC_0261

I’ve uploaded a bunch of pictures to Flickr and will direct any of you (Mum C – this is for you specifically) there for cuteness overload. You can click the link or click on any of the pics…I’ve not edited any of them….just threw them up, sorry! It’s that whole lack of time/energy thing……….

Judah is a doll. A GIANT doll, but a doll, nonetheless.

He was 22 inches long at birth, and weighed in at a healthy 9 pounds 15 ounces. He managed to lose almost a pound and went down to 9lbs 1 oz, but as of Tuesday (day 5 of life for him) he was back up to 9 pounds 11 ounces and my midwife is coming by this morning and figures that he’ll be back up to his birthweight by today. Apparently I’m feeding him straight cream….lovely!

DSC_0271

He had a bit of jaundice, but I think that’s because he was quite tongue tied at birth. We had a pediatrician at Women’s come at look at him and he was able to clip his tongue and that made nursing MUCH easier…..and the jaundice is fading quite quickly.

For whatever reason, his latch on my left side has been a bit funky and I’m in a little bit of pain, but it’s getting better now…..

DSC_0293

He doesn’t cry often, but when he does, he has a HUGE scream, which is so different from Siah. I figure as the baby of 5 kids that being able to make yourself heard and understood is not necessarily a bad thing.

He’s currently sleeping from feeding to feeding through the night, except for the first night home when he was awake and/or feeding from 3am to 6am….and then Siah woke up at 6am….to say that was a rough day as far as sleep deprivation would be putting it mildly.

DSC_0357

I’ll try to find some time to type up the birth story for anyone interested. Things were so far from what we had thought or planned and yet in spite of it all….it was a lovely, amazing beautiful birth that I will forever remember as quiet, peaceful and a calm moment in the middle of all this chaos and pain and confusion……it was the calm within a storm and even though I was so worried that it would be a horrid experience, it was anything but….. It was absolutely lovely!

DSC_0359

I don’t have as many pics of his first few days as I’d like but in the grand scheme of things…….it’s okay. It is what it is, and we’re carrying on.

I have good moments, and sad moments and better moments and its all okay! Everyday brings us all closer to the day when we’ll be reunited as a family and for that we are thankful. We are all struggling through this in our own ways, but we are being carried throughout this and we know and sense this. Peace that defies common sense within the swirling chaos. It’s an amazing thing!

DSC_0363

I hope you enjoy the pictures and I’ll try to get up more.

Thank you to everyone for your understanding at this time.

I know that Jon’s mentioned a few times about not visiting if you’re feeling sick and I’m gonna take a minute to be really clear and blunt….

Normally, when someone is sick or when you have a baby it’s customary for everyone to want to come and see and congratulate or to visit and cheer you up when you’re not feeling well……and in this case, we are asking you all to do the exact opposite.

If you are feeling even the slightest bit “off” or have a cold or cough or you think that you might not be feeling well or EVEN…..if you have been in close contact with your child or partner who’s been sick or you’ve visited your mother who’s had a cold or a fellow employee has been sick…..please PLEASE!!!!!! Don’t come and visit us at the hospital or at home….

Send your love, send your prayers, but please don’t share your illness.

Angelica has NO way…absolutely no way of fighting infection or illness of any kind. So, if someone who is just starting to feel off, but still feels fine visits her, she can’t fight off whatever you have……..and could get very sick.

The same goes for us….if you come around us (the rest of the family) and we get sick, then none of us can go in and visit her…..and just being honest…..that would be very, VERY, VERY hard on all of us.

So please, we’re asking that unless you are perfectly healthy and know that you’ve not been in contact with anyone who is sick, to please stay away until you are certain that you are not able to spread any illness to any of us.

This is not a forever thing. This is a right now….for the next month or two, kinda thing………her counts are the lowest they are going to be over this whole process right now and so we’d like to make things as easy for us as possible and staying healthy is a HUGE one.

Thank you for your understanding in this matter…..we appreciate your prayers and love and thank you for working with us in this.

I know it defies every “normal” thing that we want to do at times like this, but….it’s only just a season. And to everyone who has mentioned that they haven’t come because they’ve not been feeling well……THANK YOU! Honestly, we thank you more for not coming. It’s HUGE to us that you care so much that you’d put our health before your desires to comfort and love.

Angelica has already had her bone marrow biopsy and is just now (at 12:30ish) getting the chemo meds. We’d love if you’d stand with us that the meds would do thier job and kill the cancer cells, but that she’d be strong physically and not get massively sick as a result of the chemo……we believe in miracles and expect to see great things come out of all of this.

We don’t believe that “God only gives what you can handle” as that implies that God did this to her and to us…..but we do believe that even though bad things might happen, that He is there with us and that we will see good things in the middle of all of this….and we have…..

Your love and support has spoken so much to us through our short time on this road and we know that we have “family” all over the world standing with us, loving, praying, supporting us and carrying us through those times when we feel tired, exhausted and overwhelmed…..to know that we have such a solid support base under us is AMAZING!

In the middle of the tears, and the laughter and the pain and the joy……we can feel the strength of love and it carries us and lifts us up………

Thanks for being a part of this!

A bit of what life is like now

After what seemed like Angelica settling down and probably going home this morning, she spiked a fever last night. Because there are no white cells in her body right now, she has no immune system and cannot fight infection. Any fever is treated as a worst-case scenario until it is proven otherwise. So immediately they put antibiotics in her IV and then gave her Tylenol. Patti is going to go home today with Judah and I am going to stay with Angelica.

This is not what we wanted, but it is the reality of what we are dealing with. For the next few months, we have to take Gelica’s temp several times a day and any spike in temperature, we have to be here at Children’s within an hour. Then the protocol will go like this:

First they start antibiotics, then they draw a fair amount of blood to run a culture and see if the problem is viral or bacterial. If it is viral, then they will treat what they can and we might go home, or if it is bacterial, then we stay for the length of the antibiotic treatment. The blood culture takes between 2 and 3 days, and antibiotics take between 10 and 14 days. SO… ANY fever this summer means 3-14 days in Children’s. (This is on top of the dozen or so outpatient appointments that we have to be here for.)

So for the next few months, we have to be very clean and careful.

Thanks for all of your prayers and comments. Thanks to those that have brought food to our house for the other kids to have while we are out. Thanks for the visitors that have come and thanks to the visitors that didn’t come because they were sick. Please continue to lift us in prayer through this summer.

Jon

We want to go home

I’ve walked the hallway from Children’s Hospital to Women’s Hospital more than 50 times in the last two days. It’s been such a blessing to have both Patti and Geli on the same floor, just down the hall from each other, but at the same time it’s been a hassle.

Geli had a “bad” day yesterday. She was “NPO” which means no food or water from the midnight before and then was taken downstairs for another bone marrow biopsy and then a Lumbar Puncture (an LP is a hole made in the back to get some spinal fluid so they can do a biopsy on that.) For the procedures she was sedated and then received an anesthetic, and a side effect can be nausea. Then she received more chemo (there are multiple forms of chemo that attack different things), which also causes nausea. So yesterday afternoon she had a slight fever, nausea and was throwing up.

There is also the risk that she has picked up an infection somewhere and the symptoms of that are… nausea and fever. (hence the post from yesterday.) There is a magic number of 38.5 C. If her temp goes above 38.5 then we get an automatic treatment of antibiotics and 10 more days in hospital. She stayed below, albeit just below and has been feeling better today, but she hasn’t completely rebounded. She had a few tests today and everything was within an acceptable range, but they are still monitoring her. If there is a fever that develops then our chances of going home soon are gone.

We are asking for serious prayer that she has NO INFECTIONS, that her temp stabilizes, blood sugar stabilizes and that she is able to eat and drink normal amounts. Patti has just about stayed as long as she will be allowed in the maternity ward and really does not want to go home to 3 kids with a newborn and no husband to help.

Please pray.