Chemo, Sodium and Infection

December 18, 2010

We are home with Josie and we were able to go to church as a whole family yesterday!  She is stable and holding her own, so the doctors were comfortable with her going home.  We are so thankful that we will get to spend Christmas all together as a whole family.  The girls couldn’t wait to see Josie – they had not been up to the hospital since she was admitted for this round of chemo, so it has been a long wait.  In one of Reese’s papers from either church or school, one of the questions asked was “what are some things that are hard to wait for” – her answers were things like “Christmas, new snow pants, going home”.  Then the next question asked “What has been the hardest thing lately to wait for?” – her answer: “My sister to come home”.  Needless to say, we are all ready for Josie to be home. 

The stay at the hospital this last time has been a bit more stressful.  The chemotherapy that she received was quite strong and ended up wiping out her blood counts.  For a few days, she only had around 100 white blood cells working in her body when the norm is around 10,000.  This is quite typical for chemotherapy, and they are constantly monitoring her, but it is still very nerve wracking.  Josie’s hemoglobin dipped twice and she ended up needing 2 transfusions. After she receives these transfusions, she always seems to glow with a pretty shade of pink all over her body.  The first time she had one, I thought something was wrong with her, so I kept asking the nurse if she was okay, but I was assured over and over that it is absolutely normal.  Now I don’t worry, I just enjoy her pretty pinkness!

Josie ended up giving us two scares during this time period.  The first was that she ended up with a bacterial infection in her blood.  We are not sure where she picked up the bacteria – it could have been her broviac line or it could have come from something in her sinuses, we won’t ever know.  As soon as it was discovered, she was immediately put on antibiotics – 3 in fact.  They put her on several types that cover a general/broad spectrum of bacteria’s until the culture that they took grows enough in the lab to let them determine what exactly it is.  This seemed routine and no one appeared terribly concerned – until later when we found out it was an extremely dangerous bacteria.  Thankfully they had caught it early and were able to get it cleared up before it became really bad.    

The second scare – which was scary right from the start, was that her sodium counts went really low.  A normal level is around 130-160, Josie’s started going down first to the 125’s, then the 120’s and finally to 115.  The doctor that was on during this last week informed us of how serious this situation was and let us know that she had called in the kidney doctor.  It appears that Josie had a situation where her kidneys were getting rid of too much salt.  After trying to correct the sodium issue on the Hem/Onc floor, Josie’s sodium kept going further in the tank.  Finally, the Hem/Onc doctor had Josie transferred to the PICU (intensive care) for further treatment.  In the PICU, the doctors can be a little more aggressive with the treatment plans because they can have a nurse in her room watching her more carefully.  They did a great job of getting Josie’s sodium turned around.  They ended up giving her this medication that helps sodium stick to the cells and then gave her a pretty high dose of concentrated sodium.  The nurse that Josie had when we got up to the PICU was a bit nervous about the concentrated sodium and was very thorough with checking and rechecking the rates before he gave it to her since this type of sodium can be toxic if given incorrectly.  We were thankful for his thoroughness!  Her sodium is now holding strong in the normal range.  On Saturday, we talked to her primary oncologist and found that the real reason for her salt wasting was due to the steroid that Josie has been on since her second surgery and how it affected the adrenal gland on her kidneys.  They have since stopped giving her this steroid and balanced her sodium with other medications.

 

The funny thing about this sodium problem is that the doctors were perplexed by Josie’s demeanor.  For a typical 5 month old with a sodium count of 115, the child should be extremely lethargic, if not close to comatose.  Josie on the other hand doesn’t like to be typical, so throughout all of this she was happy, wide awake and flashing that sweet, sweet smile.  In fact, she wouldn’t even take a nap, she would stay up from 8:30am until 2:30pm and then she would finally give in to sleep.  When the Hem/Onc called to tell the kidney doctor that Josie’s level had dropped to 115, she asked if Josie was unresponsive and was blown away that she was wide awake and happy.   If you’ve seen the latest pictures on facebook, those were taken the day that her numbers were the lowest.  She is a funny girl!

After Josie’s sodium numbers leveled off, she was then sent for an MRI to check to see if there was something that had moved or changed in her head to cause this sodium wasting.   She did great for the MRI and this time she was stable enough to not need a ventilator during the scan.  The results of the MRI were only slightly changed.  The tumor did not grow any larger from her previous scan in November, but it didn’t really shrink either.  The radiologist said that it was maybe 2-3 millimeters smaller, but not significantly smaller for the types of chemotherapy she has undergone.  What does this mean?  The chemo is at least keeping it from growing, but it did not shrink like they had planned.  There are varying opinions about the next stage for Josie, depending on the doctor.  Josie’s case was taken to the tumor board (a group of up to 40+ specialists for tumors) and there was no “right” direction, but several options, all with pro’s and con’s. 

At this point, we are planning on going ahead with 2 more rounds of chemotherapy – the first will be a 3 drug cycle and then the second round will be the 4 drug cycle that she just completed.  This would mean that Josie will be in the hospital again for 3 weeks at a time to be observed for complications.  There are always the risk factors of complications – no matter which route we go.  Please pray with us that she will not get another infection and that she handles her counts going down to nothing again. 

We would love for someone to tell us that this is exactly the right route, but ultimately, we have to make the decision with God’s help, and it weighs heavy on our hearts.  The one thing that we have not lost sight of though is hope.  Our desire is for Josie to be cured and be rid of this tumor and for that we are praying intensely.  We also know that there is a greater hope beyond this world and we know that we must hold on to Josie as best we can in this world, but hold her loosely too.  At this point, we are just enjoying each day with her and she is indescribably precious and sweet. 

This update has taken me 4 days to write, so I need to wrap it up.  Continue to pray for Josie and for us as we wade these deep waters.  We have been so blessed this Christmas by so many – it will truly be a special year!

Merry Christmas,

Marc & Darcia

Sodium problems

December 12, 2010

Today didn’t start off quite as well as I was hoping.  The doctor came in this morning and said that Josie’s sodium levels are not staying where they need to be and that this is of great concern.  They are working on getting her body what it needs, but it appears to be a symptom of the tumor and brain injury. 

The doctor suggested that she might go back to PICU since that is more of their specialty, but was also good with her staying on the Hem/Onc floor if they could get her sodium regulated.  So we wait. 

Josie appears fine and has given us lots of smiles and sweetness so far today. 

We are definitely in need of prayer today. 

In Him,

Marc & Darcia

Thankful hearts!

December 2, 2010

What we were thankful for this Thanksgiving…

*Marc & Darcia were thankful for being under the same roof (our roof!) at the same time!

*Reese was thankful for the new Wii game “Mario Kart” that someone allowed us to purchase.  Quite honestly, it is very fun for everyone to spend time together playing the Wii!

*Eliza was thankful for candy and all the fun play dates that she gets to go to each week!

*Josie was thankful for not being hooked up to so many wires and lines and that she could be carried all over the house, and not be on a 4 foot leash!

*The whole family was thankful for 9 ½ days at home and to celebrate Thanksgiving all together! 

Once again it has been a while since we posted an update, it was so nice to be home and somehow being home didn’t allow me to get on the computer quite as much as I do at the hospital.  

We have had many people ask, “what was it like being home with Josie?”.   We LOVED it – although it did come with its own challenges.  The last time Josie was home we administered her daily medications, but this time she came home with twice as many medications.  Marc posted a picture on Josie’s group page on facebook of all the bottles of “goodies” that we brought home.  At 9am and 9:30pm each day, she would get a “cocktail” of 8-9 medications.  We also had to give 6-7 at 3pm, one med at 5:00 and one at 8:30pm and then we each took a turn at night getting up – Marc got up for the 1 am med and I got up for the 3am med.  Thankfully the meds in the middle of the night didn’t wake Josie up – only us! 

On top of the medications, we also administered 2 chemotherapy drugs at 9pm.  The first night home I ended up calling the Hem/Onc nurse and had to ask some questions since I was a bit nervous and didn’t want to mess anything up.  Marc would draw up the other meds while I would do the chemo.  One of the drugs I had to open the capsules and dissolve the medication in water, which meant I had to wear special chemo gloves and wear a mask so that I didn’t inhale any of the powder from the capsule.  The other drug was just a syringe that we had to push into Josie’s feeding tube, but I still had to wear the special gloves to even handle the syringe.  Talk about nerve wracking – but so willing to do it in order for Josie to be home!

While at home for the week, we still had doctor appointments – so we were out and about to the Neurologist and then to the Hem/Onc Clinic for Josie to get labs drawn, a dressing change on her broviac and then to get a dose of yet another chemo drug that we could not give to her at home.  I believe that is how it is going to be anytime that we are home – run, run, run!  Actually, I wish I was really running – all this sitting at the hospital is doing nothing for me! J

We were given a bit of a present before we left the hospital – we can now hold Josie on her right side – which is the side without a bone-flap.  We are still very careful with her, but if we want to hold her on that side, it’s not a problem unless Josie shows us that it is a problem.  Talk about a bit of freedom!  Up until this point, we have been extremely, extremely careful to not even touch that side.  To now be able to pick her up and not worry as much has been such a gift.  The rest of the gift is that Josie does like to be on that side and will snuggle right in to our arms (especially her daddy’s).

Having everyone home was good and also made us realize how used to being on the go our other girls have become.  On Friday, the day after Thanksgiving, the older girls were like wild caged tigers – Marc and I both heaved a sigh of relief once they got into bed that night!  On Saturday, Marc took them on some errands in the morning and that little outing made all the difference for the rest of the day.  It was so nice though to be home with the girls and to be able to let Josie’s big sisters hold her once again.  They are so in love with her!!

This past Monday we went back to the Hem/Onc clinic for blood to be drawn and then they admitted her back to the hospital for the final chemo drug of this cycle called Cytoxin (sounds simply dreadful, doesn’t it?!).  Cytoxin is the most powerful drug in this cycle and they wanted Josie admitted because it can cause her blood counts to drop.  They are right – her blood counts dropped today and she is currently as I write this, getting a blood transfusion because her hemoglobin dipped to far down.  Her other blood counts have all dropped today too, not dangerously low, but they still dropped.  Thankfully they are not surprised by and of this and they just give her what she needs; a boost of blood or platelets or a shot to increase her white blood cell production.  The medical world amazes me.  

Here’s my little plug and then I will get off my soap box – if you want to help – not just Josie, but lots of people, giving blood is huge!  Josie has had several blood transfusions –during both surgeries and also since she has been on chemo – it has been literally life saving for her.  Okay…I’m stepping down. 

Once Josie’s blood counts stop dropping and start to recover, an MRI will be scheduled and that imaging will help the doctors determine the next regiment for Josie’s treatment.  We hope to be able to come home once her blood counts recover and that is what the doctors are hopeful for as well.  To be home for Christmas would be absolutely wonderful and we are praying to that end!  

We have been so blessed throughout this journey – even though it is a heart wrenching journey.  God has touched our lives through so many people; words cannot even begin to explain our overflowing hearts.  We know that God is working and we see it every day in the beautiful life of our baby girl.  We continue to be on our knees and know that God is using this journey for His glory, not ours and that is the ultimate reason for anything.

Continued blessings,

Marc & Darcia

Home...so nice!

November 21, 2010

Josie is HOME!  On Friday the Oncologist for this week came in and said she didn’t see any reason that Josie couldn’t go home for a little while.  Even though she is on chemotherapy right now, these particular drugs are not the ones that will drop her blood counts.  News to us…but good news!  Josie’s reflux has also improved greatly since the last time I posted – we know without a doubt that this is due to God answering our (and your) prayers on behalf of this issue.   The 11-12 refluxes in an hour was pretty exhausting – for Josie and for us.  Along with these improvements, the doctor noted that Josie was not needing as much of the nurses care any longer – they were giving her medicine and other basic care, but the rest of the care came from me and Marc.  The Occupational, Physical and Speech therapists have showed us how do much of Josie’s therapy and felt they didn’t need to come see Josie as much since we were working with her so well.  I think we both should have new degrees once we get through all of this! 

Josie will need to go back to the hospital on November 30^th for a different chemo drug in this cycle.  This particular drug is the one in this cycle that will possibly drop her blood counts, so she will need to stay for a couple of weeks (so they say) to be watched in case her counts do go down. 

Once we arrived home yesterday and unloaded our bags of stuff that we accumulated over the past month, our house looked like it had been trashed!  In order to not have more chaos, Marc’s parents took the girls for the rest of the weekend – this took a bit of the stress level away.  Thankfully we had thought a little ahead of time and bought a 7 drawer storage bin yesterday morning.  The bin seemed huge when I brought it into the house, but we filled it completely with all of Josie’s supplies for her 9 day stay at home! 

We are administering two of Josie’s chemotherapy drugs, giving her a plethora of other medications (see picture that Marc posted today) and we have to flush her broviac central line every day.  We gave medications to Josie previously, but this time it is elevated to a whole new level.  Administering the chemo is a bit nerve racking, especially the first time, but we did it and are more than willing to do it since it means she can be home with us!

We continue to be amazed by how quickly things can change for Josie and we are extremely pleased to have Josie home even for a short time.  This Thanksgiving will truly be a thankful time for our family this year. 

Blessings,

Marc & Darcia

not home yet and reflux

November 15, 2010

Josie will not be coming home this week and actually not for several more weeks (we think).  The vomiting/refluxing is terribly worse and the only explanation is that the changing pressure in her head is messing with her central nervous system.  For example of how bad her reflux is, this morning between 8am-10am, she refluxed around 6-7 times.  She didn’t get tons out, but each time there was either saliva or stomach acid, not to mention it makes Josie miserable as she tries to get it out.  Then during the ten o’clock hour alone, she refluxed 4 times, plus gagged quite a bit.  Marc and I have been very concerned that they would send us home with her like this – since it is much worse than what we were dealing with in the summer.  We are starting to keep a running log of every time she throws up so that we have a better handle on how often it happens and how much she gets out each time.  We should have started a log earlier, but now have and it has already been helpful when we talked with the doctor. 

We did just talk with the doctor and he said that due to her increased vomiting, they don't see her going home right now.  This is good in many ways and yet it’s hard to stay here even longer.  We did voice our concerns about taking her home in this condition and they agreed that it would be more stressful and they can observe her condition more closely here.  There is a secondary rationale for keeping her here as well.  Since her blood counts have been staying even - not dipping down, and she is handling chemo so well, they would like to proceed earlier with the next round of treatment.  Instead of taking a week off, they will start the next cycle toward the end of this week, which means she would stay in the hospital anyway. 

Last night they took Josie for a CT scan because her head has started changing shape during position changes, such as when we hold her or move her in her bed.  She will get a fairly good-size "sink hole" toward the front of her head where the skull flap is missing and then it seems like fluid fills the back side of her head.  Change her position and her head goes back to "normal".   The CT results thankfully did not show anything dangerous or irregular going on inside.  The only difference is that some of the swelling has gone down around the edges of her head and that change in less fluid is most likely causing the shape changes. It’s similar to when someone loses quite a bit of weight and the first place you notice it is in their face because they have lost some of that puffiness/extra fluid.  Best analogy I could come up with to explain Josie’s head shape change! J

We hope and pray that she can come home soon, but we are also praying that a solution can be found to relieve Josie of this reflux, or at least lighten it up.  She is on several medications to help with nausea and even one that is suppose to help with inner-cranial pressure nausea, but so far not much has helped.    We just wait and see as they try to figure her out - each day seems to bring something new for Josie’s treatment. 

Keep praying...we serve a God who hears!

Marc & Darcia

MRI and much needed breaks

November 13, 2010

The last few days have been a whirlwind of visitors, doctors and finally getting both of us home for a family fun evening.  Last week my sister-in-law Tara was able to come spend an overnight at the hospital with Josie so that Marc and I could both come home together and then last night my sister-in-law Lisa did the same.  It was so good to have some “normal” family time.  Our girls have been doing great with all of the juggling that we have had to do, but it has started to wear on them.  Eliza got a little teary the other night when I called her from the hospital – she asked me when I was coming home for the night and I had to tell her I was not going to be home.  She said “well, that makes me so sad” and almost cried – thankfully Aunt Lisa gave her extra hugs that night.  The girls came up to the hospital last night and as we were walking to the cars to take them home, she accidentally dropped her gum from her mouth – you would have thought something absolutely terrible happened from the way she was crying.  That silly gum was the last straw for her and she cracked.  Thankfully we had some good mom and dad time with them last night and this morning and they appeared to be refreshed and ready to go again. 

Josie had an MRI on Thursday to see if there was something triggering her reflux/vomiting. The MRI was still not very clear for the Pediatric Radiologist to read since there is still so much blood from the surgery.  This is to be expected though, it typically takes 6-8 weeks post-op for the blood to clear enough to get a good image and it has only been 3+ weeks since her surgery.  They do believe that the reflux/vomiting is a result of the pressure and swelling in her brain.  We dealt with this issue prior to this surgery, so we are not surprised by it, but we are bummed that it has returned. 

Typically with chemotherapy, a person’s white blood cells get low and that in turn causes them to get sick because they can’t fight off infections and germs as well.  Josie seems to not be affected this way and her white blood counts are staying quite normal, in fact, they were giving her shots to boost her white blood counts each day and had to back off to giving her shots every 3^rd day instead.  This is a huge answer to prayer.  Along with this good news, we have been once again hearing the “H” word again.  Going “H”ome is the word on the hospital floor and possibly as early as Monday or Tuesday of this coming week.  This is exciting news and a bit unnerving at the same time.   We were nervous to take Josie home the last time, but this time she has a few more complications.  She has a broviac port that needs to be cared for and used, she has more medications this time around and she is still missing that portion of her skull.  We know we can care for her, but it will be different than what we knew last time, then again, nothing has been typical with Josie. J

Josie still has one more injection of chemotherapy for this cycle, but we have been told that we could just bring her in to the hospital as an “out-patient” and then take her home again.  The next cycle would start somewhere around the beginning of December and then we would be in the hospital again for a little while, but again, we have been told that if her numbers stay pretty steady, that stay may be shorter too.  We are quite amazed by all of this information and are extremely thankful too. 

We completely see God’s hand moving in Josie’s life – we are in awe of what He is doing and can’t wait to see what He plans next for her. 

We continue to covet your prayers – she is doing well, but we know she still has a long road ahead of her. 

Blessings,

Darcia & Marc

First round of Chemotherapy

November 9, 2010

Josie is handling chemotherapy pretty well so far.  She has started throwing up as of this last Friday morning.  Aunt Tara (my brother Josh’s wife) was staying overnight with Josie to give us a much needed break and ended up witnessing the first bout of yuck.  Josie has now thrown up multiple times, but the doctor does not think it is chemo related since it has been several days since her last dose and typically the nausea starts the day of or the day after treatment.  My belief is that she has started refluxing again – like she did while she was home with us.  They are keeping a close eye on her and are trying a couple different things to see if it helps her.  The main concern is they do not want her to get anything in her lungs and cause her to get sick.  Keep praying that she stays healthy as well as Marc and me.  If one of us gets sick, it means we cannot be up here with her and that would be downright rotten. L

Many people have asked about Josie’s treatment and what that looks like for a baby. The treatment that she is being given is part of a new treatment plan based out of a hospital in Los Angeles.  She receives 3 different chemotherapy drugs throughout the cycle.  One drug is a onetime dose the first day of the cycle, one drug is given once a week for 3 weeks of the cycle and the third drug is given for the first 5 days of the cycle.  Don’t quote me on all of this information, as we are still trying to wrap our minds around the whole process ourselves.  At day 7-10 of the cycle, Josie will probably be at her lowest point because her white blood cells will be low and it is harder to fight off infections.  Tomorrow starts day 7 of the cycle – they draw her blood levels every other day and will watch her closely.   After each cycle, she will probably have some type of scan done to see how the tumor is responding to treatment.  If after a couple of cycles they find that the tumor is not responding, they have another option of a 4 drug chemotherapy treatment.  It’s not necessarily a stronger treatment, just targeting the tumor differently.  At this point though, we just wait and pray.

Yesterday she had a surgical procedure done to place a broviac line in her chest.  This is a more permanent and safer port that she can have in for an extended period of time for chemotherapy.  Everything went fine with the procedure – it took a little longer since she is an infant and her veins are very tiny.  When the time comes for her to go home, the line will remain in and we will be able to use it to administer medication at home.

I had a glimpse of hope today as Josie looked at me and actually smiled and shortly after that gave me another smile along with some itty bitty coo's.  My heart melted, I must say!  It feels like things are clicking back into place for her - like she is coming out of the fog of all the surgery and drugs in her system.  When we thought we might lose her the night of her surgery, one of the only things that kept going through my mind, was her precious smile, the thought of not seeing that smile again tore me up.  I asked God that night, that if He spared Josie’s life that I might see her smile again.  Thank you God for answered prayer and proof that He cares about even the smallest things like a smile!

A friend of mine wrote me today and said, “I don’t know how to make sense of Josie’s suffering.”  I pondered her words for a while throughout the evening, my conclusion: I can't make sense of Josie's suffering either.  It makes it all the harder when I can't just pick up my baby and comfort her because I have to be so careful not to pull any wires and cords; and I can only hold her a certain way because she is missing part of her skull; and that sometimes picking her up to hold her makes her more uncomfortable than she was just lying in her bed.  Some days it stretches me extremely thin, yet each day, I realize that God has put Josie in our life and her life is for a reason, no matter how long or short her days may be on this earth.  God has a much bigger picture than I can ever understand, in fact he has the whole picture and every brush stroke of that picture is perfectly painted – including Josie.  With that truth, I am secure – it doesn’t mean we won’t have a lot of tears and heartache for our baby girl to have a “normal” life or even life in general.  The strokes seem harsh right now, but they are forever making the final picture glorious.  For right now though, I am looking at the beautiful brush stroke of a miraculous baby smile. 

Blessings (and hopefully a restful night here with Lil’ Jo),

Marc & Darcia

Decisions

November 3, 2010

We have been in a whirlwind of doctors, specialist and transition over the past several days.  Once again…where to begin is always the hardest part, do I start with the newest info or do I start with what got us to the newest info?

Last Thursday, Josie’s Oncologist came to talk with us.  He explained our options for Josie’s care, we basically have two options:

1.  Take Josie home with hospice care

2.  Start chemotherapy and see if the drugs will shrink/shrivel the tumor

The doctor explained to us what chemotherapy would be like and what it would mean for her care.  This will be a long process lasting at least 6 months to even longer depending on how the tumor reacts to the drugs.  At this point it will probably be a 4 week cycle where she will have chemo administered and then she will stay at the hospital for 3 weeks in order to monitor her carefully and keep her immune system from being compromised.  The last week of the cycle she will be at home and then the cycle will start over.  Being able to go home though will most likely depend on how her blood counts are doing and if she would be susceptible to infections during that 4^th week.  The Oncologist told us that he would not even present this option if he did not feel that there was a good chance that this will work. 

We had the weekend to discuss our options and were given more information to review the chemotherapy choice in order for us to make an informed decision.  Although chemotherapy is a hard choice to make, and has its own downsides, we have decided to go this route in order to give Josie a chance at life. 

Chemotherapy will be starting tonight (Wednesday).  Originally they had told us Friday, but they want to get this started sooner than later.  This tumor is very aggressive and our Oncologist is concerned that it is even now growing.  As the body heals, it releases healing chemicals and those healing chemicals even go to the “nasty” tumor, which then thinks that it needs to heal and grow too. 

Sunday and Monday we started to see some improvement in Josie’s behavior.  Previously if Josie wasn’t sleeping, then she was in a constant state of irritation/fussiness.  It seemed to be that it was a toss-up of whether she was still in pain or if she was having withdrawal from the pain medicines that she had been on.  Marc and I knew she was being well cared for, but we really wanted to see something work to help her agitation.  Finally they gave her a large boost of Phenobarbital (seizure med) along with some other variations of milder pain medications and it has done the trick.  She is very calm now when she is awake and will stay awake for quite some time.  Josie still doesn’t like to be picked on and is very sensitive to touch, but getting better with more and more stimulation. 

Yesterday (Tuesday), we heard rumor that Josie is no longer intensive care and could now possibly be moved to the 7^th floor in the Hematology/Oncology section.  We started packing things up, but then of course things didn’t move as quickly as we thought, so we ended up waiting for a couple hours before they did indeed move us.  She is now resting well in a very large crib.  We really like the staff in the PICU, but it is nice for Josie not be considered intensive care any longer. 

The 7^th floor is nice and we have our own room and even our own bathroom in the new room.  Being on this floor though also means that we do more of the basic care for Josie, so we are changing diapers, doing oral care, strapping on these little arm splints that she has and even holding Josie now!!!  It makes my blood pressure go up a little to handle her since her head is very fragile.  Josie’s head is fragile because she is missing part of her skull, there was too much swelling after surgery, so they could not put the skull flap (that’s what they call it) back in place – it is somewhere here at the hospital in a freezer.  For those that have never heard of this before, it is completely safe and even though they don’t have the skull flap in place, there is skin over it, which is why we have to be so careful.    

Occupational and Physical therapy were here today and were able to turn Josie very gently over on her tummy and she tolerated it for about ½ an hour.  This is a very good sign and good for her to be able to move to another position other than on her back. 

Marc went back to work today for the first time and so it is just me here with Josie.  Pray that we can find balance with being here, our girls at home and now with Marc working.  It is quite the juggling act – we are so thankful for the many people that are helping us out.

With God there is great hope.

Blessings,

Darcia & Marc

whirlwind week...

October 27, 2010 

It has been a week since we weren’t sure about the future of our baby girl.  She has come a long way from then and has continued to be the little miracle baby.  This week has been a blur to us, but throughout each part, we can feel the presence of our mighty God.  We have had many times of sorrow and grief and just waiting for the next moment.  That is when He has sent us friends to hug us and love on us and sent family to comfort us and to help us sit through the long hours of waiting.  We have felt the many hundreds and thousands of prayers sent up for our dear lil’ Jo.  We are still unsure of the future, but God has preserved this little ladies life and I am sure He has been rejoicing by the amount of intercession that is being done on her behalf and on our behalf.  Thank you!

So how is Josie doing?  She is one tough cookie!  We posted on the wall that she was able to get her breathing tube out on Monday and was given a little air cannon that fit in her nose for extra oxygen.  Then on Tuesday they stopped the oxygen because she was doing everything on her own.  They decided to stop the oxygen in the midst of the Tornado warnings – it helped to not have one more thing to worry about as she was being moved back and forth from her room to the hallway.  Oh, what chaos! 

On Tuesday they removed her arterial line, an IV line and her catheter (too much information? – she’ll be so embarrassed later on in life when she reads these!).  She still has her central line in her right shoulder area and will continue to have this line for medicine administration.  They started her feeding tube feeds on Thursday or Friday night (time runs together when you are at the hospital) and she is up to full feeds and handling them well.  Many of you knew she had severe reflux problems at home and starting her feeds up made us a little nervous that she would begin to reflux again.  So far that has not been the case – Praise God! 

Today was a busy morning – the doctors and therapist all seemed to come in a steady stream.  They included: Neurosurgeon and his PA, Neurologist, Physical Therapist, Occupational Therapist, Speech Therapist and then to top it all off, she ended up having an EEG.  She was a tuckered out little girl!  The best part of those visits was the Speech Therapist – she started messing with Josie’s mouth – of which she didn’t like one bit at first.  Then she calmed down and actually seemed to enjoy being messed with for once.  The last thing the Speech Therapist did was to try a pacifier AND JOSIE TOOK IT!  We were so amazed!  We haven’t been able to give her a pacifier since August because her gag reflex had become highly sensitive.  I have now given it to her several times today and she keeps taking it – amazing!

As I write this, Josie just had another seizure – not sure if it was the busy day or the nurse was given the go ahead to turn her more on her right side (the side where the tumor is) than she has been and if that jump started something in her brain.  Not sure we’ll know the answer to that one, but it is what it is – poor kiddo!  Not an easy thing to watch.

Josie’s case goes to the tumor board on Friday and from there we will hopefully find out more of what is to come.  We know that they cannot do anything until she is more healed and that is at least another week away (usually 2 weeks post-op).  This tumor is aggressive, so they can’t leave it alone for too long, but she has to be stronger before any other procedure. 

We are feeling the weariness of this week – we are both tired.  Pray for Josie, pray for us, pray for our girls, who are being shuffled around a bit. 

Blessings and good night,

Darcia & Marc

Post-Surgery Update

October 23, 2010  Post-Surgery Update (this will be a long post and somewhat detailed, so if you get queasy, it may be hard to read)

It’s hard to know where to begin – we have lots of information that we would like to share.

Let’s start with the day before her surgery.  Josie was in the hospital the day prior for a procedure called embolization.  Embolization is a process by which they take a micro fiber catheter and feed it to the specific artery that they want to “block” the blood flow.  The doctor that did the procedure was able to find a large artery that was feeding the tumor and was able to block it off.  Basically, this was a successful procedure.  The hope was that when Josie went to surgery, there would be less bleeding because this artery was blocked.

The day of surgery:  Josie went to an MRI first thing prior to surgery.  This was to help them during the surgery so they could tell from the images where they were and what was tumor and what was brain.  Later we were informed that the tumor had doubled in size since the last MRI, which was a little less than 4 weeks ago.  This made the tumor the same size again as when they first found it right after birth.  It is an extremely aggressive tumor.

Everything was going well during Josie’s surgery; every update seemed to be a fairly positive report.  One of the last updates, they said that she had a little bleeding, but they had gotten it under control and were continuing.  Then we were told that she was out of surgery – that she was fine and to wait in a little conference room for the doctor.  We thought it was odd that we got a conference room when most people were told right in the waiting room how things went for whomever they were waiting for.   But since they told us that she was fine, we did not anticipate what the doctor came in to tell us.  He sat down and looked weary and then told us that things did not go so well.  Josie started bleeding, they would get it under control and then she would start bleeding from somewhere else, they would get that one under control, but then she started bleeding from places they weren’t even touching.  She received 3 volumes of blood and then her body stopped coagulating (wouldn’t clot).  She was in serious condition.  They ended up leaving some cotton balls soaked with a clotting medicine inside and then closed up her head.  We were obviously devastated.  In fact the doctor was even shaken by the way things turned out since they had gone so well for the first 4 hours. 

They took Josie up to the PICU, where they worked for 1.5-2 hours trying to stabilize her, of which they were able to do.  Praise God.

Thursday morning:  Josie had another CT scan and then we talked with the doctor.  He was surprised that she was holding her own – said he thought maybe she was stronger than he gave her credit for.  The CT scan didn’t show any worse than right after surgery.  Josie even opened her eyes and looked at the doctor.  Earlier, she had moved her legs enough to kick her little blanket off.  The rest of the day she was pretty quiet – which is a good thing.

Thursday night:  Josie started having seizures again – not to be unexpected due to her trauma.  They are currently still trying to get these under control with meds. 

Friday morning:  Josie went for another MRI – this is for post-operative imaging.  During the MRI, the neurosurgeon came by to talk to Marc and me.  The news was quite sickening.  The part of the tumor that had grown back was checked by pathology and the new tissue is malignant.  The type of tumor she had at first, an astrocytoma can have multiple cell mutations in it.  When pathology checked it the first time, there were not indicators of malignant cells, but the part that was left in her brain from the first surgery must have either had those cells in it or they mutated since, which is a possibility.  

The first steps are to get Josie better from surgery, which at this point, she seems to be doing okay, although this morning they found that she has a urinary tract infection from her catheter.  They are on it though and are giving her antibiotics.  Stopping the seizures is another step they need to get under control. 

Next step…the doctors (neurosurgeon and the oncologist) are creating a plan for her.  At this point, they are planning on a new chemotherapy drug – used in infants.  Then they will develop a further plan from that stage. 

So…we wait and we pray.  This will be a long haul for our sweet baby Josie.  Not sure of the future, but glad that she is resting peacefully here in the hospital and also in the loving arms of Jesus.  My emotions have been pretty raw, but for the most part Marc and I are working through this moment by moment.  The girls (Reese & Eliza) are doing well; they are at Nana & Papa’s this weekend and having a great time I am sure.  Pray for them as they are going to get shuffled around a bit for a while. 

Thank you to all who have been and continue to pray for Josie – she needs it.  Thank you to all of our family and dear friends that have surrounded us – we need it.

Blessings,

Marc & Darcia

Next Surgery Date

September 30, 2010  Next Surgery

We received the call yesterday for Josie’s surgery date.  She will be going in to the hospital on October 19 for a procedure called embolization.  This procedure will be done to block the veins that are running to the tumor so that when they do the operation the hope is that she will not bleed like she did during the first surgery.  The actual surgery will take place the following day on October 20^th.  The same doctor will be performing the surgery and we are more than confident in his abilities.

We are now in the process of figuring out how everything will work during that timeframe for the rest of the family since the girls are both now in school.  My mom is coming to help some of the time and we will work out the rest of the logistics as we know more. 

We continue to covet your prayers…we know God is at work in this beautiful little lady!

Blessings,

Darcia & Marc

Tumor is growing...

September 24, 2010  growing…

It is with a heavy heart that I post an update for Josie.  This past Thursday, Josie had another MRI to check on the remaining portion of her tumor.  Unfortunately, her doctor told us that it is growing once again.  L  We were quite shocked to say the least.  My thoughts going into this check-up were that the tumor was either the same as the last time or my hope was that it would be smaller and going away.  I quickly remembered the nauseas feeling I had when we were first told that she had a brain tumor right after her birth, because I was once again feeling nauseated.  We were shown the images of her tumor and the doctor compared the before pictures and the after pictures.  I couldn’t believe what he was saying, yet I knew he was telling us the truth. 

Because the tumor is growing, Josie will be going in for her 3^rd brain surgery (her biopsy was an actual surgery) in 2-3 weeks from this post.  A date has not been set as our doctor wants to have the other pediatric brain surgeon in Josie’s surgery with him and that doctor is not back until next week to make the appointment. 

The doctor took Josie’s case to the “Tumor Board”, which is held every Friday.  This Tumor Board is made up of 30-40 doctors/PA’s and other specialists that make decisions on tough cases within the hospital.  They all agreed that this is the route that needs to be taken for Josie’s tumor. 

As for our other concern, her feeding tube, it has now become a lesser inconvenience in light of what she is up against.  She is still having reflux multiple times a day (went through 4 outfits today) and sometimes it really hurts her and other times, we don’t even realize she has something coming out of her mouth.  We did have an ultrasound of her stomach and everything is in working order according to that screening.  The doctor (neurodevelopment) has started Josie on a new medicine, but it doesn’t seem to be helping…yet.  

The one thing that we must do is to keep Josie healthy.  She has to be “sick free” in order to have the surgery.  We will now need to keep Josie home as much as possible.  This will be difficult, especially with kids in school now and germs are everywhere.  We have noticed that she is pulling at one ear and that is a concern as to whether or not she has an ear infection.  I will be calling her pediatrician on Monday if it continues. 

Tonight I am struggling with letting my baby go through this whole ordeal again, yet knowing that she must undergo it for healing to take place.  There is that fear of the unknown and what will happen during this surgery.  As I was praying over her tonight while I rocked her to sleep, I had to fight the urge to grasp at the situation and try and control it (which I can’t very well do anyway), or open my hands and give it to God.  I think a few of my fingers were pretty reluctant to let go.  My heart is still sad and grieving, but my heart and Josie are in a safer place – God’s hand.

Please pray with us as this rollercoaster starts up all over again.

Blessings,

Marc & Darcia

New Doctor

9/2/10 New Doctor

Amazing - it is September - in some ways life has zoomed by and in other ways, it feels like we have had the longest summer ever. Somehow things don't balance out though!

It has been quite some time since we last updated everyone on Josie and I have promised to write today - despite a cranky baby this morning. :)

Just a clarification and a little bit of surprise, the rash on her head ended up not being what I thought it was in the last posting. The doctor called (a week after I should have received the results) and said "by the way, the rash actually was a staff infection - good thing we put her on the antibiotics." The only problem - we hadn't started her on the antibiotics because we had made the decision to not give her the medicine if she didn't really need it and we assumed we would hear back from the doctors office as soon as the results were back - not a week later. I talked to them about that "slip" and they were extremely apologetic and were going to look into the situation. So, we did end up giving her the antibiotics and her infection has now cleared up and gone away.

The last few weeks since the MRI posting have been relatively quiet, mostly doctor appointments and a couple of unexpected feeding tube checks. The first tube check happened because Josie got a hold of her tube and pulled it out about an inch and a half and the second tube check happened because her feet got stuck on the medicine port portion of her tube and pulled it out again about the same amount, so with that one we weren't worried about taking her in for a check, until we noticed medicine in her spit-up the next morning, so in we went AGAIN. You know it's bad when the radiology tech knows you by name and laughs when he sees you come through the door. Each time she was checked, the tube was still placed in the intestine, not as far as it had been initially, but doing what it is supposed to be doing. I always feel like the over-anxious parent after these visits, but the radiologist tech assures me each time that I did the right thing by bringing her in.

Needless to say, the feeding tube has been the most frustrating thing with Josie. Not just the fact that it can easily be pulled out and that she has tape plastered to her face all the time, but it is an inconvenience to carry the pack around too. The main frustration though is that Josie has really bad reflux which could possibly be a side effect of the tube, although we have been told by several doctors and specialist that it probably isn't. A lot of babies have reflux, but in Josie's case, her feeding tube bypasses her stomach and goes right into her intestine, so she has nothing but saliva and stomach acid that comes out when she refluxes. (hopefully that is not too detailed for some of you)

We had been trying her on a pacifier and the bottle throughout the day in order to get her used to sucking. She started sucking really well on the pacifier (never on the bottle), but inevitably about 10 minutes later, she would gag and reflux because she swallowed to much spit while sucking on the pacifier. We still thought it was progress, but then last weekend, she started gagging almost immediately when we would put the pacifier in her mouth. We have been told by the doctor to stop trying with the pacifier and bottle for the time being so that she does not develop an even worse aversion to them and until the reflux issue is solved. As the saying goes, "1 step forward, 2 steps back".

We met with a new doctor yesterday - she is a neuro-development doctor. One of her specialties is working with the feeding process - she will now be the doctor heading up the management and direction of the feeding tube as well as her reflux/gagging issues. YEAH! We are so thankful - this has been one of those things that had been dropped as to who would manage her feeding issues, so a real answer to our prayers. This doctor will also follow all of the other developmental areas too for Josie - another praise!

The doctor is quite concerned about the reflux issue and wants to resolve that before we do anything else. She has ordered an ultrasound of Josie's stomach and esophagus to start the process for determining why she has it so bad. I am waiting for the call today to schedule a time for the ultrasound. Once we find out what needs to happen and start the process (whatever it may be), then we can start up on the sucking and swallowing process. The doctor also started us on a new formula for Josie that is partially broken down already since she is missing that digestion process by her tube going directly to her intestine. This change could also help with her reflux – not sure how that happens, but the doctor said it could calm it down. I must say – formula is already not a pleasant thing to smell, but this new formula smells disgusting – don’t know how babies handle that stuff! If it does the trick though, we are all for it!

Finally, some basic stats of what Josie is doing and how she is growing – she is now officially a 10 pounder and filling out beautifully – little rolls and everything. She is now smiling and cooing quite often. She has a beautiful smile (biased I’m sure!). As far as her development, there has been some concern that her left side might be affected since her tumor was on her right side and actually replaced some of her brain on that side, but so far she is moving all limbs equally and both eyes track together all the time. In fact we were very excited the other day because she grabbed one of the toy butterflies on her bouncy seat with her left hand and she was holding on pretty tightly. It was a great assurance that the left arm/hand is working just as well as the right. She truly is a miracle baby!

We continue to be on our knees for our little Josie and know that God has great things for her. She has already taught us so much about ourselves and about the great God that we serve in the past 8 weeks. We could not and would not be in the place that we are without trust in the almighty One as well as the through the great support of people that He has brought alongside us.

I have already seen such miracles in Josie and look forward to seeing more and more!

Blessings,
Marc & Darcia

MRI Update

8/19/10 MRI Update

On Monday Josie had her MRI - all went well. They ended up sedating her which meant she needed an IV and a breathing tube. I was taken a little off-guard when they said she would need a breathing tube. They wanted to safeguard her airway while under sedation and also the fact that she would be far away in the tube if something did happen. We were fine with that scenario once it was explained, but also concerned because the last time she had the breathing tube removed, she had "strider", which is what makes her voice sound scratchy. She did just fine though and only had a little scratchiness right after it came out and then it cleared up.

The appointment with the Neurosurgeon went very well. The MRI showed that Josie's brain which was squished over to the left by the tumor was now back to the center. Very good sign! As for the tumor growth, the doctor did not believe it to be growing. The tumor did look different, but he said it is probably folding in on itself because he took the center out in the first surgery. He was very pleased with her progress and how well she is healing. YEAH! Josie has another MRI in one month. Not sure if this will be a monthly process, but the doctor would like to watch this tumor carefully and if possible, get her to 6 months old before the next surgery. We are very pleased with this report.

As for other updates, we are in the process of getting another specialist involved in Josie's care. No one was really "in-charge" of her feeding tube, so now we will be meeting with a GI doctor or specialist that will direct what happens with her feedings and reflux issues. To this point, these 2 things have been the items that have caused us the most concern, so we are glad to have someone stepping in to help Josie.

The rash has pretty much dried up and our conclusion is that she has normal baby "cradle cap" and due to the steroids in her system, they flared up into the rash instead of showing up as just dry scaly scalp. That is not an official prognosis, but it seems to fit with everything that we have been told.

It has been really nice the last couple of days - we are actually home without any appointments - maybe this is a a glimpse at the "new" normal.

Blessings to all...
Darcia & Marc

MRI scheduled

8/15/10 MRI

We have had a pretty "normal" week of doctor appointments and life at home. We had one unexpected trip to the Pediatric clinic on Thursday (which she had an appointment for Friday already and we went to that one too!). Josie broke out in a rash all over her little head the day after she got her new feeding tube. We watched it and let the doctor office know about it early in the week, but then the rash started getting worse and sores started popping up under the tape holding her feeding tube. The tape was right by her eyes, so her eyes also got infected. On Wednesday afternoon we called again and they wanted us to bring her right in Thursday morning. They tested for bacterial and viral infections and so far nothing has been confirmed about what the rash is on her head. After 2 baths, the spots have somewhat cleared up and dried, but her little head looks pretty yucky.

Tomorrow (Monday, August 16) we take Josie in for an MRI. This will be her 1 month image following her brain surgery. This will be a long appointment - approximately 1pm-5pm. Josie will be put under with general anesthesia because she has to hold absolutely still for the scan.

Keep us in prayer - we will meet with her neuro-surgeon on Tuesday to go over the results.

We have been so well supported by everyone - thank you for all the help, we have needed it and appreciate it more than you'll ever know.

Blessings,
Darcia & Marc

Doctor Appointments...

8/7/10 Doctor Apt Updates

We have been home with Josie now for a little over a week. We have had some really good days and some not so good days. Thankfully we have had several friends and family that have helped out this week in so many ways - watching the girls, meals and lots of support.

Doctor appointments started on Tuesday of this week - starting with drawing labs for the following day’s appointments. Wednesday was Josie's Neurology appointment - all went well and they are going to keep Josie on the same seizure meds for now. One of the meds elevates her liver levels, but they are not too concerned at this point - they don't want to mess with changing her meds until she has had it in her system a while longer. They are keeping a close eye on this liver level, which puts our minds at ease a bit.

On Thursday, it was supposed to be a day that I didn't need to go out and about with Josie and I was hoping to get a little needed rest while some friends took the girls for the afternoon. Instead, Josie has started this gagging/throwing up thing that is very disconcerting to me, so I called the Pediatrician and they wanted me to come in to the office with her. That visit ended with me taking Josie to Radiology to get an X-ray of her belly to make sure her feeding tube was still in the right place. After 2-3 hours later, the result came back that it was positioned correctly and I went home with no answer to her throwing up problem.

Friday...I should have known it was going to be one of those days when right from the start, our dog knocked my full cup of coffee off the coffee table. (anyone want a 9 year old dog???)

Josie's first appointment was at the Peds Clinic for our "first" follow-upvisit after her hospital stay. This apppointment was very good and we changed a medication for reflux (possibly the throwing up issue) and then after much screaming from Josie, the nurses got her feeding tube retaped. Unfortunately, because the appointment went much longer than anticipated, we were almost an hour late for Josie's speech therapy appointment, so they told me that we would have to reschedule for next week. I was devastated - I was really looking forward to this appointment and then to not get to meet with the therapist, pretty much shut me down emotionally. I struggled incredibly with this and felt crushed, but there was nothing I could do about it nor did I have any control over being late.

On the way home, I cried and felt drained, little did I know that this was only the beginning of a draining day. As I got home, I opened the van door and started to get Josie's carseat out - what I didn't realize is that the feeding tube cord was stuck on the opposite side of the van seat. The action of lifting the carseat out and the cord catching was enough to rip poor Josie's feeding tube out. I immediately fell apart. Thankfully I got a hold of Marc and gave him the number to call and he took it from there. Marc came home so that he and I could take Josie back to the hospital (this time to the ER) for her feeding tube to be replaced. After talking to the PA that inserted the new tube, he said that the process of the tube coming out didn't hurt her and that things like that just happen. The thing that probably hurt more was the tape ripping off of her face (poor thing!).

Josie had a very fussy rest of the day and slept a lot, which means she didn't sleep very well in the night. *yawn* I think she was skidish this morning about being picked up or handled since yesterday was so traumatic, but she finally settled down and had a good 2 hour wake time this morning and is napping right now.

Keep praying for her Josie and for us - we are feeling somewhat weary - tired from not sleeping well and also feeling somewhat emotionally drained. We really need to get Josie eating (anyone have tips or tricks) so that the feeding tube can come out for good.

well...this has been a long post and lots of information, but we wanted to let you know where we are at with Josie.

We are just waiting on time for what comes next - we have realized that we can only take it one day at a time and keep walking in faith - which means sometimes we take steps without knowing what is coming next.

Blessings -
Marc & Darcia