Birthday Party rescheduled

August 11, 2011

Hello all.  Well, as you may have noticed, there hasn't been much as far as Josie updates lately.  In our minds, that is good.  It means she's behaving herself.  :)  The past month has been relatively quiet, with only one trip to the ER, which thankfully did not result in a hospital stay.  She had some sort of fever that, of course, went away as soon as Darcia and Jo reached the ER (at 3:30 am).  They were home by 7:30, and things have been pretty good since then. 

Josie has started up Physical Therapy again, at the Rehab Center and at our house.  She's also got Speech Therapy, and is back in the swing of things as far as chemo goes.  Josie continues to grow, and has started a new diet this week.  Hopefully that will give her the nutrients and such that she requires as a 1 year old.  I guess baby formula only goes so far. 

Darcia has been pretty busy getting Josie to various appointments, juggling things around the house, and setting up appointments and get-togethers for Reese and Eliza.  Also getting things ready for back-to-school time.  That should make things....more busy, I suppose! 

Anyway, we haven't fallen off the face of the earth, we're just back to our "normal" life with Jo.  Thanks so much for your continued prayers and thoughts. 

We hope to see you at Josie's birthday celebration, if you can make it!  (August 20, 1-4 pm, Blythefield Hills Baptist Church, Rockford, MI, open house, no gifts please!). 

Teething, Therapy and other Thoughts

March 30, 2011

Teething is the newest phase in Josie’s life right now!  Sometimes we forget the stages of “normal” babies and things like teething catch us off guard.  This has been a good stage for Josie though as she is now sticking her fingers in her mouth in order to sooth her inflamed gums.  The fact that she allows her own fingers in her mouth without gagging herself is monumental.  She really likes her index finger and has been toying with her thumb the past few days; we never thought we would appreciate a child sucking on her own fingers so much!

We may be turning a corner with Josie starting to eat – this past week she has tolerated tastes of applesauce, bananas and pears.  She has gagged a bit, but has learned to swallow the gags and once she does that, she seems pretty proud of herself and breaks out in smiles.  It is a very slow process, but we are encouraged with a little progress.  Josie is getting Speech therapy once a week to help work on this area of development. 

We met with Josie’s Neuro-Development PA (Physicians Assistant) and she suggested that we go ahead with a g-tube (tube that is surgically placed in her stomach) so that we can get the tube out of her nose and that will hopefully help with the reflux and also will help the progress of eating and swallowing.  Right now the consultation with those surgeons will not be until April 28 and the surgery will be pending the MRI results.  Until then, we have been blessed with some fun and colorful tape to use on Josie’s face.  Since she has to have the feeding tube, we might as well make it a little bit pretty and fun!

Josie has also started outpatient Physical therapy once a week.  We have only had one session and by the end of it Josie was so exhausted that she fell asleep sitting up.  We are going to PT today and in the first visit the therapist mentioned using special tape on her left arm to try and “wake up” her muscles and she also mentioned getting braces for her legs that would help her when she is in the standing position.  Not sure if all of that will happen today, but I am very encouraged by this therapist and that she wants to get Josie to go as far as her body will let her go.

During the week we also have an “Early On” therapist that comes to our house.  Early On is a program through the school districts that helps kids like Josie.  Josie loves “Miss Liz” and has seemed to make progress each week that she has had this therapy.  Liz works with her on PT, OT and speech from both a developmental and educational standpoint. 

We have been weaning Josie’s pain meds and she is now off both of the meds she was addicted to (Morphine and Ativan) – Praise God!  That also means we have dropped 6 syringes of medicine a day!  Josie met with her Neurologist and is now being weaned off of one of her seizure medicines too.  This will be a very slow wean, to drop just the middle of the day dose, it will take 7 weeks.  Regardless of how long it takes, we are pleased that she is being weaned from this medicine.

Based on the appointment with the Neurologist, Josie will have an EEG in May, to monitor any seizure or other neurological activity.  This is a routine test for brain trauma patients.

On April 25, Josie will have an MRI.  By this time, she will have had 2½  rounds of this new chemotherapy.  This image will tell us if the chemo is shrinking the tumor that has started growing into the left hemisphere of her brain.  If the chemo has worked, then our Oncologist has given the okay to take a little break in order for Josie to get the g-tube in her stomach.  If the results are not favorable and the chemo appears to not be working, then we are at the end of our options for chemotherapy.  So this MRI is a big deal and it is with quivering knees we approach this timeframe.  We are praying continuously for a miracle and for God to heal our Josie.  Some days we almost forget how fine a line we are walking with her because she seems to be doing so well from an outward appearance.  Things like this MRI bring us back to the reality of what is going on in our little girls head and brings us to our knees before our magnificent God. 

On May 1^st, we are taking a walk against pediatric cancer.  There is an 8K run/5K walk that we have signed up to walk.  All proceeds raised from the walk will stay here in west Michigan for research for pediatric cancer.  The top 2 pediatric cancers are brain tumors/cancer and leukemia.  If anyone is interested in doing this walk with us, you can register at the following website – the early bird registration is done, but you can still register for the race.

www.milansmiraclerun.com

Finally, we are planning a “Birthday Bash” for Josie on July 9 from 2pm-5pm.  It will be an open house at our church and everyone is invited.  We will send something out a little closer to that timeframe, but we wanted to start getting the word out a little early.   Feel free to spread the word to others that would be interested in coming, but might not have facebook or get this email update.  We know many of you are too far away to come, but please know that we appreciate everyone that has supported, prayed and just been with us through this year of Josie’s life.  We are looking forward to a fun time of celebrating Josie and maybe, just maybe by that time, she will be able to try some cake!

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

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

Back to work for Marc

7/26/10

Since it has been really quite quiet with Josie the last few days on Floor 7, I haven't posted much. We are very pleased and excited for all the good reports we are having about Josie. I was told at one point today that the doctors and nurses in their rounds are calling her a miracle baby. She sure is!!! We are truly blessed.

Today has turned out much more crazy than I anticipated. Marc was planning on going back to work today - he still did go, but he ended up going in later. Josie's CAT scan was moved to 9am (was at 5am), so when Marc got here to the hospital, he ended up waiting - hoping to talk with the neurosurgeon before he went to work. He left at 11:30 and of course the doctor came at noon. It was all good though and the CAT scan of Josie's head is looking good. YEAH!

From that meeting with the doctor, I ended up talking to so many other doctors, nurses, specialist and friends. Somewhere in there I was supposed to take a nap...it didn't happen. :) Everyone is coming to meet with us to prep us for going home.

Home...it's a wonderful, yet terrifying word. I am trying to turn my worries into trust in God as I hear these words. I truly believe we will be equipped by everyone here to handle the transition, but it will be quite the transition. For example, one of the discharge nurses is going to create a calendar for us with meds and dosage and other such information. Any help we can get...the better!

We were worried about Josie's neck having a kink in it because she likes to always look to her left side, but thankfully, PT (Physical Therapist) came today and let us know that she is only a little tweeked that way and promptly showed me techniques to get her to go the opposite way - and they work!!! Tried them already!

Lots of other information that I won't go into, but wanted to let you all know that Josie is doing well. We still covet your prayers as this next stage of life is going to be just as crazy, but in a different way.

We are thanking God for such a miraculous recovery that Josie is making. We couldn't have made it through without all of your prayers being lifted up on our behalf for our baby girl and our family.

Blessings,
Darcia

*By the way - big sisters are coming home tomorrow! Can't wait to see them - they've had a GREAT "vacation" with Uncle Josh and Aunt Tara and of course their cousins!