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