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Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths STRAIGHT.

Friday, September 23, 2011

Day +119

I found this and am posting it even though I don't have a child with cancer, but I do have a child with a terminal illness.

I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them.

I get funny looks wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes.

... To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.

No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am.

I am a woman who has a child with cancer. I will forever walk in these shoes.

- Author unknown

Tuesday, September 20, 2011

I'm so sorry that I haven't been able to do a proper update, my laptop bit the dust so I am updating from my phone. We have been home for a little over a week now. Things have been doing good. We went to our home clinic last Tuesday and this Tuesday. Her counts are doing really well! I don't know the exact counts cause I don't get z print out of them here. Last week her platelets were 71 that's up from 57 when we saw the Dr on Thursday the 7th in Minneapolis. HGB was up to 10.? Up from 9.7 too. This week when we went to clinic he said they were same as last week. We have been going non stop! I think we were actually home this past weekend and got caught up on the laundry.....but again it is all piled up again.

Well I wanted to reassure everyone that we are well and we didn't fall off the face of the Earth. Busy, busy, busy! Hopefully I will getto do a proper up date from a real computer!! I will work on that tomorrow or Thursday!!

~ Kelly

Thursday, September 8, 2011

On the road!!

Greetings from the road, we are about 122 miles north of St Louis. We are excited! Anelia is comfy in her seat watching Justin Beiber. She is hooked up to her nightly fluids,so we told her to holler if she needs to tinkle. Nathan already called us earlier to see where we were and to make sure we were driving straight through.
There are many tears of joy being shed. I am so grateful to Dr Wagner for all that he has done in his hard work to give my children and otherchildren with FA a longer, healthier life. I told him there will never be enough or the right words to thank him for my children. Next to my children he is also my hero!! Such a talented, caring and amazing man!
We will start a new journey when we gethome and get settled into a new home clinic. Dr Wagner said once a week to clinic, we are thrilled to hear that. We are praying that she won't need blood products any more, but know that until the HC goes completely away a transfusion may be in the future. Today's counts were really good too WBC was I think 3.6 hbg 9.7and platelets on her own were 57!! She is 100% donor with 70-80% cellularity. Her CD 4 is only 30, which is normal for this stage in BMT, but that means her immune system is still low and she must still wear her mask and avoid crowds and crowded areas, and any one who is sick in any way!! She will get a flu shot as soon as they are available. She will not be re vaccinated till June.
We already have our follow up appointment fir her 6 month check up scheduled for Nov 17th.
Thank you all for your support and prayers and thank you in advance for many more as we embark on a new journey and chapter of life after BMT! I'll try to post from home soon!!!
~ Kelly

Wednesday, September 7, 2011

Day + 103

Tomorrow morning we have our last clinic visit with our wonderful Dr Wagner! We have to be to clinic for 8:30 for labs and then at 9 we see the dr. We will then head back to the RMH to wait for our supplies of fluids for Ameliaand then we are hitting the road for about a 20 hour ride back to home sweet home! Please pray for us as we travel the straight through ride.

We are ready to be home, but nervous at the same time. There are things that we will miss and thinks we won't! Life will once again change again as we venture into more uncharted territory. She is not out of the woods by any means and will still be required to wear her mask, mostly every where she goes. Our house will be her one safe haven for her so we have asked people respect our request for no visitors right away till we get things settle. She still has no immune system and will need to get re vaccinated.
I will let everyone know tomorrow from the road.

Sunday, September 4, 2011

Amelia standing next to Lake Superior!

A big snow-globe for her collection!!

Happy day 100!!

Today is day 100!! 4 more full days till we turn into birds and fly south for the winter!!! Please say a prayer that every thing goes smooth and we are on our way by Thursday afternoon!!!

Yesterday to beat the boredom we took a ride to Duluth, MN. Which is about two and half hours north of the twin cities.... Of course it took us just a bit longer due to construction, but still it was a beautiful town. We stopped and had a late lunch and got outto see Lake Superior. Of course Amelia wanted to do more , but I just can't get her to understand she is still in a very fragile state.....even though she fells the best she ever has!!!
So today it's back to packing and praying. Thanks so much everyone for your continued support and prayers we will need them!

Thursday, September 1, 2011

Day + 97

We had clinic on Monday and Thursday. We have had busy days off trying to fill the boring spots with outings and riding around the area. Amelia said we are practicing for the ride home. She had been doing pretty well. She hasn't had any blood transfusions in a while the last infusion was of platelets and that was on the 22nd of August. Her counts have been doing really well. On last Thursday her counts were 52, we returned to clinic on Friday and they were 51 so we didn't get a transfusion, we went in on Monday and her platelets were 46, still we opted to not do platelets to see what they are going to do on her own, well today her platelet count was 48!! We still didn't transfuse her we will watch her over the weekend and pray that the hemorrhagic Cystitis doesn't rear it's ugly head and drop her counts!! As for her red blood goes she hasn't had a transfusion for those in a longer amount of time Since the 19th of August. Her hgb has been 10.8-10.5 for quite a while now.
We are praying that we have a nice quiet weekend and time to pack and get ready to head home on the 8th!! please pray for this along with her! She is so ready to be home!!
I can't believe it has been 97 days since transplant. I can't wait till this is all but a memory and in our rear view window. I just want to get home and get back into a routine, my poor little Nater is missing his sister terribly, he maybe missing his momma too just a bit!

Well I will let you know what the weekend brings.