Two days of sunshine and even a couple of smiles

5-19-15

Haley woke up feeling yucky again.  She felt a bit better after she puked.  Today we all packed up and headed south to go to Haley's Dr apt with the naturopath.  We were going to go on a trail walk after her apt.  However, the dr ended up not being there because he was sick.  They tried to call and tell me but they only had my home number.  So we all played freeze tag on the grass next to the clinic.  It was grandma Debbie and myself against Hannah (nanny) and the children.  Josiah and Hannah were little helpers.  They could not be frozen but they could un-freeze the others if they could be coaxed into tagging their hands.  I must say.  Grandma Debbie and I conquered (eventually).  And man was I sore the next day.  (I'm not used to running.)

We ended up going to Costco and eating lunch there.  We headed back up to Seattle after that because we wanted to beat the traffic.  We were going to walk on the trail that was next to the RMH but ended up just hanging out at the park.  There was a dog the kids were playing with.  By the end of the day Haley was feeling a bit better.  It was so nice that Hannah and I took the kids for a walk after dinner (although we didn't actually leave until almost 8 pm...we are so slow!).  We found a park with a playground set on it.  Haley even braved the merry-go-round.  She had a blast!  I was afraid that might make her sick and she would be puking again but she really wanted to try. I figured she was the one that would have to suffer the consequences so I told her to go ahead.

Haley went to bed feeling pretty okay.  However, she woke up around 2 AM needing to rush to the bathroom.  She didn't quite make it and then she needed to puke.  She didn't quite make that into the bucket either.  Bummer!  She did feel a little better after though.  I cleaned up the messes and turned her "feeds" down to just under 2 ounces an hour.  Then back to bed I went!

5-20-15

Haley woke up feeling pretty good.  She wanted to eat.  She hasn't really eaten in a LONG time.  But she was ready to eat.  Unfortunately, we slept in and ran out of time before we had to be at her clinic apt.  I picked up Ashely and Isaac (Elizabeth was already with me) in hopes that Hannah (nanny) could get some studying done while the babies slept.  And we were off to clinic.  This was a tough day.  Although Haley was feeling pretty good.  Mentally it was tough.  The surgeon came in during the apt and talked about Haley's surgery options.  She has three.

1) Amputation (great option for active lifestyle).
2) Internal prostesis (where they remove a significant portion of her femur, knee and a small amount of her tibia and replace it with metal and plastic).  This is not a great option for an active lifestyle. 
3) I can't remember the name of it but it was the most bizarre by far.  They would remove the lower half of her femur, knee and the upper half of her tibia (basically the whole middle part of her leg).  Then they turn what's left of her lower leg backwards and reconnect it to her femur.  Her heal then would serve as her new knee (with her foot pointed the other way).  She would then ware a lower prostetic.  SO STRANGE!!!  I can see the benefits.  But SO STRANGE!!!

Haley doesn't like any of the above options!  Who would?  While she was processing all of that we were off to the next Dr apt with the naturopath where she got hit with another hard blow.  As it turns out Haley has celiac disease (aka gluten intolerance) and a milk allergy.  This was enough to bring my little sweetie to tears.  She LOVES to eat foods that contain gluten and milk.  With everything else that is going on this was just to much!  I told her it was okay to cry.  We did go on a little walk before we headed back to Seattle.

On a brighter note...Haley has gotten her appetite back.  She ate some cantaloupe for lunch and some soup for dinner.  She said it felt so good to eat.  Unfortunately, she goes back to the hospital for chemo tomorrow.  I told her we wouldn't have to check in until the afternoon.  That way she could eat breakfast and lunch before she's admitted.

Even with the heavy blows of today there were times I saw a glimpse of my sassy Haley.  And her beautiful smile!  Thanks for your continued prayer for her protection as we go in for round number three.        

Happy Birthday to Me!!!

Monday 5-18-15

Today the sun is shining.  What a special birthday gift for me!  I love to see the sun!  Haley is sitting with a puke bowl in front of her.  And she pretty much stayed that way for the entire day.  She did throw up in the morning and again in the evening.  Although it was mostly just dry heaving in the evening.  There was nothing in her tummy because she felt so sick that she had turned her "feeds" off.  She has a pump that feeds her 24/7.  It was a lovely day out and we did get a couple of hours out side to enjoy it...even with the puke bucket. 

Last night baby Hannah vomited all over in her crib at the RMH.  My mom (who was in town for my birthday) said that she was chocking on her vomit and couldn't breathe.  That freaked her out.  She was able to get to her and turn her over (not caring that puke was getting all over her) and she began to breathe again.  But what a mess.  Hannah (nanny) was so thankful that my mom was there to help her deal with that horrific mess.  It was a doooozy!
   

The rest of round two

Friday 5-15-15
Haley's tummy is so ouchie.  She said it doesn't feel nauseous really although she did throw up this morning (all over herself and her special blanket).  She said it did feel a little better afterward.  Now we get to wait until the chemo is cleared out of her system.  Lots of fluid and peeing. 

Haley spent all day very uncomfortable.  She didn't even want to try and play the guitar when music therapy came to her room.  She pretty much just stayed in bed all day feeling crumby.

Elizabeth and Josiah got to spend the day with Haley and I in the hospital.  It was so beautiful today.  Josiah and I tried to get Haley to go outside on the roof top to feel the sun.  But she was not interested in getting out of bed. 

Morgan has been staying with Grandma Debbie and today Josiah said, "where's Morgan?"  I told him she was with Grandma and he said, "I miss her".  Sweet boy!  So we spent some time chatting on the phone with Morgan.  Hannah (our nanny), started to not feel very well.  When Hans got to the hospital after work I headed over to the RMH to relieve Hannah of the children.  Hans stayed with Haley and I stayed at the house.    

Saturday 5-16-15
Haley puked again this morning.  She still feels pretty awful.  They started checking the methotrexate level today.  She has to have it cleared out of her system before she can be discharged.  It was still to high today.  She'll continue getting large amounts of fluid and we'll check again tomorrow.  She spent the rest of the day in bed.  Baby Hannah and Elizabeth got to hang out with her today.  Hans took the other children with him to go get a new propane tank and fill our other ones.  We ran out (which means no heat in the camper).  Hannah (nannay), got to hang out by herself at the RMH and rest.  Haley spent a couple of hours by herself in the evening while Hans went after a large tote that we can pump our RV tanks into (so we can use the toilet).  And I took the kids back to the RMH to eat some dinner and put them to bed.  After they were in bed (with the exception of Hannah, who got a late nap and was not ready to sleep) I took baby Hannah back to be with Haley until Han got back.  He stayed over night with her.

Sunday 5-17-15
Hannah (nanny) felt much better this morning.  Thank you Lord!!!  She took the kids down to get breakfast and I stayed in the room to clean, organize and take a shower.  I got word from Hans around 11:30 that Haley's methotrexate level was low enough for her to be discharged.  Unfortunately, she is still feeling pretty crumby.  By the time I got over to the hospital and we "moved out" it was about 2:30 when we got back to the RMH.  Grandma and Morgan had already got there.  Today is Morgan's 11th birthday.  We had a little party after dinner with brownies, ice cream and presents.  Elizabeth, Haley and I headed back to the camper to sleep (Hans was already there sleeping), and Grandma and Morgan stayed at the RMH with the others.

        

Second Round of Chemo

Haley was pretty tiered Sunday and Monday and was battling a fever.  Her temp was up and down.  But thankfully it was only in the zone of needing to check it every 30-60 minutes and not in the zone of needing to take her in.  She hasn't had an appetite really at all.  I'm so thankful for the NG tube.  That is one battle I don't have to fight.  I look forward to being able to make all her food but for now she is primarily getting fed a formula.  I did make a green smoothie for her and she didn't even have to taste it.  There are definite perks to an NG tube.  Haley was just starting to feel a bit normal again.  Her smile was not such a rear thing the last couple of days.  Especially when she was playing with her friend Katie (who also happened to bring her two pug puppies that are only four weeks old) who came to visit Wednesday night.  It's such a joy to see her beautiful smile.  Earlier that day, I took the whole troops (minus Morgan who is with Grandma Debbie) with me to Haley's clinic apt.  Isaac and Ashley enjoy spending a couple of hours in the sibling playroom.  Elizabeth, Hannah and Josiah hung out with Haley and I in the clinic room.  The room always looks like a tornado went through after we are done.  The clinic has snacks available that my children take full advantage of.

We are in the process of trying to overcome technical challenges with our camper.  Like needing propane (our tanks are the old style) so we can have heat and our holding tanks empties so we can use the toilet and sinks.  The silly annoying things that we just can't ignore.

Haley and I did manage to get a shower yesterday (this is a big accomplishment indeed...there is just never a convenient time to take a shower) before she was admitted for her second round of chemo.  They started the infusion and almost immediately Haley's tummy began to hurt.  She also had some redness appear around her port sight.  So they stopped it to get the Dr to come take a look.  They wanted to make sure she wasn't having an allergic reaction to this new drug.  This one is different than the first one that she got.  She will have two weeks of this chemo drug and then repeat the first one again the following week.  So Haley will have three weeks in a row of chemo.  Being admitted on Thursdays and hopefully discharged Sundays.  But that is not my focus.  I am just getting through today.                   

There is so much about this journey that I do not like.  Watching my little girl get pumped with "hazardous" toxins and her tummy cramp up.  Feeling alone as I care for all aspects of Haley's care by myself while my husband is away at work.  Not having any time to connect with my husband.  Trying to find parking because our van is to tall to park in the garage.  Seeing my babies just want to be with their mommy but they just can't.  They don't understand why they have to go to bed with out mommy.  Or spend their day with out mommy.  Going back and forth from the camper to the Ronald McDonald House.  Trying to remember where my keys are and other things that I need.  Not really knowing what loose ends I left behind in our house is Graham.  Still needing to do things like pay our bills.  Forget about filing our taxes for 2014.  (Good thing we don't owe any.)  Feeling unable to really deal with the disrespect and disobedience of some of my children.  It's just flat tough.  There are no easy answers.  The battle in my mind is raging.  The enemy really wants me to focus in on all the things I hate about this journey.  So I'm up at 4:30 in the morning (after helping Haley go potty for the third time tonight) unable to go back to sleep.  My hope is in Christ.  I cling to Him.  This song reminds me of the truth.  The enemy is defeated in Jesus name.  https://www.youtube.com/watch?v=TVsRM55_jsE  This has become Haley's theme song.  She loves watching this.  God is at work in our family.  And I trust Him to bring us through.  Not because we are so good.  But because He is so good!!!  Thank you so much for fighting this battle with me in prayer!!!  I know in the spiritual I am not alone.       

Yea though I walk...

Saturday night we attended a dinner auction fundraiser that our church friends put together. It was an amazing evening!!! We stayed at our house (in Graham) instead of making the drive back to Seattle. My five year old daughter woke up screaming in the middle of the night (approx 1:30 AM). After I comforted her and put her back to bed I went and checked on Haley. She said she wasn't feeling well so I took her temperature. I was not happy to see that it was 101.4. We took some blankets off of her and waited about 30 minutes and then checked it again. 101.8! If Haley's temp ever gets above 100.8 the Dr wants her to be at the hospital with in the hour. So we decided to leave all the other sleeping children with the nanny and Hans and I headed north with Haley. We called them to let them know that we were on our way. This way we avoid waiting in the "germ filled" waiting area with our immune compromised girl. They got us back into a room as soon as we got checked in. They drew blood so they could check her counts and culture it. I was to sleepy to think about putting the numbing cream over her port. Oops! While we waited to the lab results to come back they tried to give Haley Tylenol. She didn't want any so I refused it. And I am SO glad I did. Over the course of the 3 and a half hours that we were there her fever broke on it's own. Her lab work looked good. But her ANC was abnormally high so they wanted to give her a dose of antibiotics for good measure. I pleaded with them not to. Haley's poor gut is still suffering from the week of antibiotics that she got last week. They finally consented to hold off on the antibiotics but if her fever came back I would need to bring her back for another blood draw. Okay! So by 7 AM we were at the Ronald McDonald House giving our burning eyes some relief. Our first ER run done! I glad that's over and praise the Lord she didn't need to get admitted. Haley and Hans (her daddy) stayed at the RMH that afternoon while I went and picked up our other children. It was a long day but I'm so blessed this Mothers Day! I have seven amazing little world changers. Life certainly hasn't gone in a direction I would have chosen but never the less God is good. And He's walking with us every step of the way. Haley is scheduled for a clinic apt this Wednesday May 13th. And will be admitted May 14th for round number 2 of chemo. Thank you so much for your prayers, encouraging words and financial support. This is such a difficult journey. Psalm 23:4 "Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me..."

I treasure the moment that Haley looks up at me with teary eyes and says, "I'm so glad you are my mom."

 Renewing our minds with TRUTH!!!! as we begin this challenging journey of chemo.

Haley's very first visitors!!!  Thanks for your love Beams!!!  You are great friends!!!

The one and only day I had to pack up everyone to move to Seattle the next day and I have a sick baby on my hands.  This poor girl can not keep anything down.

Smiling faces before the rest of them all got the nasty tummy bug that made them all hurl!!  Praise God Hannah (the beautiful nanny) didn't get it.  

"Aahhhhh  Mmmooommmmm..."

"...my hair!"

5-5-15 trying to recap the last 6 days

Sometimes when there is no update that it good news.  Unfortunately, this time it's because I've been so busy going to clinic visits and caring for Haley that I just haven't had time.   I'll try and catch you up to speed here.  It's all kind of a blur actually as I'm thinking back.  

4-30-15

When Haley was not able to keep down her anti nausea medicine I called the clinic to get her in.  I had Josiah with us (because he stayed the night in the camper).  Normally I would push Haley in her wheel chair and she would push Josiah in his stroller.  But Haley’s tummy was bothering her to much so she was not able to do that.  Security ended up coming over from the hospital to the parking lot where the camper was parked to help me.  I pushed Josiah and He pushed Haley.  It was a LONG day at the clinic.  Haley did not want to co-operate with getting weighed, etc.  They accessed her port and gave her some anti-nausea meds and fluids.  We (Dr’s and I) decided that it was appropriate to put an NG tube in (much to Haley’s dismay).  She just wasn’t able to drink enough to stay hydrated.  This process Haley was not looking forward too.  I wish I (or the nurses) would have had the foresight to take Josiah out of the room before we started.  At the first failed attempt Haley was fighting and screaming and Josiah burst into tears.  The child life helper took him out to the waiting area while we struggled to get the ng tub in.  Twice it came out her mouth (oops).  She was not making it easy for them.  There were two nurses and myself holding her.  The nurse told her she would try one more time and if she couldn’t get it that Haley would need to be wrapped up in a blanket.  Getting her NG tube in was a HORRIBLE experience.  And Haley was flat ticked about the whole thing.  I left her in the room to “cool down” while I had the pump training.  This was a long clinic day.  Poor Josiah at one point was falling asleep in my lap.  We were all exhausted.  They went ahead and left the port access in because she had another apt tomorrow morning at 7:50.

Isaac ended up staying with us in the camper that night.  The other children were with Hannah (nanny) at the hotel.  Haley did not sleep well and puked often. 

5-1-15 

Isaac came with us to clinic that day.  He had a good time playing in the sibling play room and then helping himself to the clinic snacks.  It was an even longer clinic day then yesterday.  Hannah eventually came and got Isaac.  Haley got blood drawn (out of her port), fluids, and anti-nausea meds (this time she got Zofran, Benadryl and reglan) and before all that was over she had spiked a fever.  With the combination of a fever and her ANC coming back as 10 we were on a one way road to admission back into the hospital.  Her ANC needs to be at 200 in order to avoid admission.  I traded places with Hannah (because Hans never showed up).  She stayed with Haley while they were waiting for a room to be ready and I took the other children with me to the Dr’s because last night as I was getting ready for bed I noticed bumps on my right side that reminded me very much like the shingles I had about a year ago.  I left Morgan in the Van with Hannah (hoping she would take a nap – failed attempt) and went in the Josiah, Ashley, and Isaac.  I got the prescription for the anti-viral.  When I opened the door to the van a monumental wave of poo stench hit me.  During the investigation process I found Hannah with a major blow out.  And I mean major!!!  Cleaned her up, tried to get my prescription (but it wasn’t called in yet), dropped Morgan and Isaac off at the camper because they were complaining that they didn’t feel well and headed over to the RMH to get dinner.  Only there was no dinner that night.  So back to the camper we went.  I found out Hans went home because he had a fever and felt terrible.  I was beginning to prepare something to eat and the next thing I know Isaac is puking all over the floor.  I began to loose it.  Morgan sweetly offered to clean up Isaacs puke and reminded me, “The victory has already been won Mom!”  I traded places with Hannah.  This time Haley was already admitted into a room.  It was after 7 at this point.  My mom drove up to get the two sickies, Baby Hannah and Isaac and take them back to her house.  Little did we know that she should have also taken Morgan…and Josiah…and Ashley.  By morning Hannah left for home with the rest of the puking children. And Hans stayed at his moms.  And I was with Haley.  WOW!!!  This was one brutal tummy bug.  Elizabeth eventually (5-5-15 @ 1 in the morning) joined in the puking fun!  That makes all 7 of the children! 

 Meanwhile, Haley’s numbers continue to go down (not good but was expected as a direct result from the chemo).  She did test positive for the corona virus (common cold), but all other blood cultures and viruses tested negative.  She started receiving iv nutrition on 5-3-15 because she isn’t tolerating her feeds and isn’t eating anything.  She had a platelet transfusion on 5-4-15 because her platelets were at a 9.  Her ANC dropped all the way to zero.  Which means she really has no immune defense.  She’s been on antibiotics since she was admitted.  Her tummy has really been bothering her.  It’s been more cramping than nausea.  She’s still on the anti nausea meds around the clock.  She was on Tylenol around the clock for the first couple of days until I had them back off.  Her temp gets high around 103 but we are finding that it comes back down on its own.  Unless she is feeling really horrible or her temp reaches 104 we’re not giving her Tylenol.  She bounces back and forth from feeling uncomfortable and week to feeling really miserable and week.  She’s puked a couple of times, had a couple of baths, and had a lot of diarrhea.  Her feeds (through her NG tube) have slowly increased to 40 mls an hour (that is just over an ounce).  As you can see she’s not getting much nutrition into her tummy.  So now we hurry up and wait for her fever to go down and stay down, her ANC to be above 200, and her feeds to go up.